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    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Advocacy Groups
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Copy of Patient/Caregiver Panels

Rare Patient Voice recruits patients and caregivers wherever they are, including at awareness walks, disease-specific meetings and conferences, on social media, and through recommendations and word of mouth. Patients and caregivers sign up with us solely to take part in surveys, interviews, and other studies. They are excited to participate. They know we keep their information private, and that they will get paid for their time. In addition to recruiting at in-person events, our patient outreach team is always busy developing relationships with referral partners, advocacy groups, and patient support networks throughout the world.

Submit a Proposal Request

Here are our current patient and caregiver counts by condition and country. We typically obtain 50% response for non-cancers, and up to 20% for cancers.  If you do not see the information you are looking for, please contact requests@rarepatientvoice.com.

 testtesttesttesttest
Disease/ConditionPatientsCaregiversTotal
ABCD Syndrome224
Achalasia33538
Acne22517242
Acoustic Neuroma (Vestibula Schwannoma)16521
Acromegaly26531
Adams-Oliver Syndrome (AOS)134
Addiction43265497
Addison's Disease (Adrenal insufficiency)22755282
Adenomyosis59160
Adhesive Capsulitis (Frozen Shoulder)25530
Adrenal Cortical Carcinoma (ACC)527
Agenesis of the Corpus Callosum (ACC)72835
Aicardi Syndrome189
Alagille Syndrome (AS)369
Albinism191938
Alkaptonuria213
Allergies14404141854
Alopecia11519134
Alpha 1 Antitrypsin Deficiency (A1AD)841599
Alternating Hemiplegia of Childhood (AHC)022
Alzheimer's Disease (AD)11112711382
Amniotic Band Syndrome202
Amplified Musculoskeletal Pain Syndrome20424
Amputation7358131
Amyloidosis23427
Amyotrophic Lateral Sclerosis (ALS)87101188
Anal Cancer84488
Anemia1155941249
Aneurysm471562
Anhidrosis (Hypohydrosis)235
Ankylosing Spondylitis (AS)46137498
Anosmia (loss of smell)808
Anoxic Brain Injury71320
Antiphospholipid Syndrome (APS)1297136
Antisynthetase Syndrome404
Anxiety64227227144
Aortic Disease9334127
Aphantasia404
Aphasia141327
Aplastic Anemia (AA)10868176
Appendix Cancer12012
Apraxia65965
Arachnoid Cyst15621
Arachnoiditis25328
Arteriovenous Malformation (AVM)27835
Arthrogryposis Multiplex Congenita (AMC)193352
Aspirin-like defect (ALD)112
Asthma34957994294
Ataxia12072192
Atrial Fibrillation (AFIB)28780367
Atrophic Vaginitis819
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,192310072930
Atypical Hemolytic Uremic Syndrome (aHUS)9230122
Auditory Processing Disorder (APD)302454
Autism52915302059
Autoimmune Disease28838326
Autoimmune Encephalitis (AE)18826
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,19126217
Barrett's Esophagus88896
Barth Syndrome (BTHS)3912
Bartonella23326
Basal Cell Carcinoma (BCC)40343
Batten Disease22325
Beckwith-Wiedemann Syndrome (BWS)044
Behcet's Disease (BD)601070
Bell's Palsy21728
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,411051
Beta Thalassemia (Cooley s Anemia)42951
Bile Acid Malabsorption (BAD)707
Bile Duct Cancer (Cholangiocarcinoma)11617
Bipolar18693692238
Bladder Cancer531871
Blood Cancer291039
Blood Clot12818146
Blood Clotting Disorder9714111
Blount's Disease112
Bone Cancer421456
Borderline Personality Disorder (BPD)42625451
Brain Aneurysm601272
Brain Cancer494594
Brain Damage305888
Brain Tumor10167168
BRCA Mutation26026
Breast Cancer (BC)10461041150
Breast Cancer in Men202
Breast Implant Illness101
Bronchiectasis70878
Bronchitis12810138
Bronchopulmonary Dysplasia (BPD)077
Bulging Disc1548162
Bursitis1044108
Calcinosis617
Calciphylaxis224
Campomelic Dysplasia022
Cancer372112654986
Candidiasis (Yeast Infection)34135
Capillary Lymphatic Venous Malformations (CLVMs)011
Carcinoid Cancer10010
Carcinoma36238
Cardiofaciocutaneous Syndrome (CFC syndrome)246
Carnitine Deficiency7916
Caroli Disease268
Carpal Tunnel Syndrome (CTS)35615371
Castleman Disease (CD)527
Cauda Equina Syndrome516
Celiac Disease (CCD)569146715
Cellulitis15520
Central Pain Syndrome (CPS)16016
Cerebellar Atrophy123
Cerebral Amyloid Angiopathy112
Cerebral Cavernous Malformations (CCMs)123
Cerebral Palsy (CP)186578764
Cervical Cancer76783
Cervical Dystonia45348
Charge Syndrome3811
Chiari Malformation (CM)310103413
Chilblains (Pernio)505
Chronic Fatigue Syndrome (CFS, ME), BBBBB,73022752
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)14513158
Chronic Intestinal Pseudo-obstruction (CIPO)22830
Chronic obstructive pulmonary disease (COPD)10324731505
Chronic Pain18391892028
Chronic Venous Insufficiency (CVI)401858
Cleft113041
Clostridium difficile (C Diff)43649
Clubfoot142034
Cluster Headache22734261
Coffin-Lowry Syndrome (CLS)011
Cognitive Impairment (CI)474087
Colon Cancer (CRC)9127118
Colon Polyps17017
Colonic Inertia16016
Color Blind011
Colorectal Cancer (CRC)71980
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,28829317
Congenital Adrenal Hyperplasia (CAH)91322
Congenital Central Hypoventilation Syndrome (CCHS)156
Congenital Myopathy14721
Congenital Sucrase-Isomaltase Deficiency (CSID)61218
Constipation22662288
Conversion Disorder (CD)16117
Coronavirus (COVID-19)21825243
Cortical Dysplasia156
Costochondritis61263
Cowden Syndrome (CS)437
Craniocervical Instability (CCI)51253
Craniosynostosis52025
Crohn's Disease (CD)15592581817
Cushing's Disease (CS)20313216
Cyclic Vomiting Syndrome (CVS)17865243
Cystic Fibrosis (CF)7799811760
Cystic Hygroma022
Cystinosis224
Cytomegalovirus (CMV)171027
Dandy Walker Syndrome (DWS)51823
Darier Disease (DD Keratosis Follicularis)415
Deep Vein Thrombosis (DVT)13713150
Degenerative Disc Disease (DDD)987781065
Deletion Duplication Syndrome36261297
Delta-Storage Pool Deficiency448
Depression (MDD)66976367333
Dercum's Disease (adiposis dolorosa)23124
Dermatomyositis (DM)831295
Desmoid Tumor26329
Developmental Delay (DD)39336375
Diabetes (DM)493121717102
Disabled323365
Disruptive Mood Dysregulation Disorder (DMDD)121729
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,79281
Diverticulitis17214186
Down Syndrome (DS)9151160
Dry Mouth24125
Duodenitis617
Dupuytren's Contracture19221
Dwarfism286492
Dysarthria (Slurred Speech)8614
Dysautonomia12031271330
Dyskeratosis Congenita145
Dyslexia522981
Dysmenorrhea (Painful Menstruation)52254
Dysphagia (Difficulty Swallowing)8743130
Dystonia9532127
Ear Cancer101
Eating Disorder28531316
Eczema (Atopic Dermatitis)710127837
Edema771794
Ehlers-Danlos Syndrome (EDS)13461721518
Elephantiasis (Lymphatic Filariasis)426
Empty Sella Syndrome (ESS)17017
Encephalitis131124
Encephalocele033
Endometrial Cancer46753
Endometriosis89231923
Enlarged Spleen (Splenomegaly)12113
Eosinophilic Colitis (EC)17724
Eosinophilic Esophagitis (EOE)268268536
Eosinophilic Gasteroenteritis (EG)401858
Epicondylitis (Tennis Elbow)13013
Epidermolysis Bullosa (EB)7613
Epilepsy120321963399
Epithelial Basement Membrane Dystrophy404
Epstein Barr Syndrome (EBV)1154119
Erb's Palsy336
Erectile Dysfunction (ED)48957
Erythema Nodosum808
Erythromelalgia25126
Esophageal Atresia (EA)31619
Esophageal Cancer14923
Esophageal Varices314
Essential Thrombocythemia15318
Essential Tremor9821119
Ewing's Sarcoma19423
Exocrine Pancreatic Insufficiency (EPI)55762
Eye Cancer10515
Fabry disease23040270
Failure to Thrive (FTT)134255
Familial Adenomatous Polyposis (FAP)52961
Familial Hypercholesterolemia (FH)27835
Familial Mediterranean Fever (FMF)7613
Fatty Oxidation Disorder (FAOD)2973102
Fetal Alcohol Syndrome (FAS)42731
Fibrocystic Breasts44246
Fibrodysplasia Ossificans Progressiva (FOP)7613
Fibromuscular Dysplasia (FMD)20222
Fibromyalgia (FM)32181893407
Fibrosing Mediastinitis505
Fibrous Dysplasia14317
Fistula38947
Foot Drop47653
FOXG1 Syndrome12728
Fragile X Syndrome (FXS)216283
Friedreich's Ataxia (FA)221941
Functional Neurological Disorder (FND)47855
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency)8210
Galactosemia055
Gall Stones63467
Ganglioneuroblastoma022
Gastric Bypass49251
Gastric Dysmotility11313126
Gastritis21218230
Gastroesophageal Reflux Disease (GERD)17302541984
Gastrointestinal Stromal Tumor (GIST)23629
Gastroparesis (GP)815102917
Gastroschisis7714
Gastrostomy Tube (G-tube)7348121
Gaucher Disease (GD)652893
Gender Dysphoria57259
Giant Cell Arteritis (GCA)729
Glucose Transporter Deficiency (GLUT1DS)134
Gluten Intolerance73578
Glycogen Storage Disease (GSD)13821
Goiter29231
Goldenhar Syndrome246
Gout16739206
Graft Versus Host Disease (GVHD)461359
Granular Cell Tumors101
Granuloma Annulare (GA)15116
Grave's Disease (GD)26922291
Guillain-Barre Syndrome (GBS)69574
Hansen's Disease (Leprosy)101
Hashimoto's Disease (HT)1146571203
Head and Neck Cancer15217
Headache28818306
Hearing Aid148123271
Hearing Loss410223633
Heart Disease177710562833
HELLP Syndrome303
Hemangioma11718
Hemihyperplasia347
Hemochromatosis (Iron Overload)10016116
Hemophilia8969641860
Hemorrhoids65368
Hepatitis37781458
Hereditary alpha-tryptasemia (H?T)10111
Hereditary Angioedema (HAE)641377
Hereditary hemorrhagic telangiectasia (HHT)15621
Hereditary Spastic Paraparesis (HSP)56864
Hereditary Spastic Paraplegia (HSP)341650
Hernia24531276
Herpes (HSV)1828190
Hidradenitis Suppurativa (HS)39713410
High Blood Pressure (Hypertension, HBP), BBBBB,40438094852
High Cholesterol (Hyperlipidemia)16582561914
Hip Dysplasia573390
Hip Replacement8222104
Hirschsprung's Disease (HD, HSCR), BBBBB,104454
Hirsutism15015
HIV895103998
Hodgkins Lymphoma1047111
Holoprosencephaly (HPE)099
Homocystinuria (HCU)268
Horner Syndrome7411
Human Growth Hormone Deficiency (GHD)133195328
Human Papillomavirus (Human Papillomavirus (HPV)92294
Huntington's Disease (HD)192323515
Hydrocephalus123181304
Hyper-IgA Syndrome011
Hyperaldosteronism707
Hyperemesis Gravidarum (HG, Morning Sickness), BBBBB,9110
Hypereosinophilic Syndrome (HES)13417
Hyperhidrosis77178
Hyperkalemia18321
Hypermobility Syndrome18119200
Hyperoxaluria213
Hyperparathyroidism11011121
Hypersomnia1491150
Hyperthyroidism18114195
Hypocalcemia18220
Hypoglycemia (Low Blood Sugar)24729276
Hypohidrotic Ectodermal Dysplasia (HED)279
Hypokalemia75378
Hypokalemic Periodic Paralysis301040
Hyponatremia808
Hypoparathyroidism13415149
Hypophosphatasia (HPP)14216
Hypoplasia of the Corpus Callosum347
Hypothyroidism23631822545
Hypotonia21124145
Hypoxic Ischemic Encephalopathy (HIE)73542
Hysterectomy964100
Ichthyosis639
Immune Thrombocytopenic Purpura (ITP)13417151
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS)14317
Incontinence18649235
Incontinentia Pigmenti (IP)42529
Infertility79281
Insomnia84464908
Intellectual Disability29138167
Intermittent Explosive Disorder (IED)7714
Interstitial Cystitis (IC)29213305
Interstitial Lung Disease (ILD)11222134
Intracranial Hemorrhage (Brain Bleeds)6410
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,22717244
intracranial Pressure (ICP)617
Iritis21122
Irritable Bowel Syndrome (IBS)1452771529
Ischemic Colitis202
Jansen's Metaphyseal Chondrodysplasia112
Juvenile Arthritis (JA)130168298
Kabuki Syndrome055
Kaposi Sarcoma (KS)415
Kawasaki Disease347
Keratosis Pilaris (follicular keratosis)25328
Kidney Disease13034811784
Klinefelter Syndrome (XXY Syndrome)123
Klippel-Feil Syndrome (KFS)8816
Klippel-Trenaunay Syndrome (KTS)639
Knee Replacement9118109
Lactose Intolerance751287
Lamb-Shaffer Syndrome011
Lambert-Eaton myasthenic syndrome (LEMS)20121
Landau Kleffner Syndrome (LKS)156
Langerhans Cell Histiocytosis (LCH)8715
Larsen syndrome224
Laryngeal Cancer123
Laryngomalacia31922
Laurence-Moon-Bardet-Biedl syndrome (LMBBS)123
Learning Disability4678124
Legg-Calve-Perthes Disease (LCPD)10818
Leiomyosarcoma12012
LEOPARD Syndrome314
Leukemia24691337
Leukocytosis13013
Leukodystrophy172542
Leukopenia9110
Lichen Planus35035
Lichen Sclerosis (LS)65469
Lipedema38442
Lipodystrophy617
Liposarcoma17017
Lissencephaly02323
Livedo Reticularis (LR)12113
Liver Cancer402363
Liver Disease (not hepatitis)544144688
Loeys Dietz Syndrome213
Loin Pain Hematuria Syndrome (LPHS)12012
Loss of Mobility423678
Low Blood Pressure (Hypotension)23412246
Low Testosterone42345
Lung Cancer266116382
Lung Disease206126332
Lupus26622362898
Lyme Disease27827305
Lymphedema20224226
Lymphocytic Colitis23326
Lymphoma541266
Lymphoproliferative Disease (LPD)5611
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC)16218
Macular Degeneration14342185
Mal de debarquement Syndrome (MdDS)505
Malabsorption31132
Malignant Hyperthermia (MH)9211
Maple Syrup Urine Disease (MSUD)71118
Marfan Syndrome (MFS)311546
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,50366569
May Thurner Syndrome22123
Mayer-Rokitansky-K ster-Hauser (MRKH) syndrome202
McCune-Albright Syndrome (MAS)10212
Median arcuate ligament syndrome (MALS)66167
Memory Loss8344127
Meniere's Disease (MD)979106
Menopause84286
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,48351
Mental Illness12362185
Mesothelioma235
Metabolic Syndrome431356
Metatarsalgia303
Methicillin-Resistant Staphylococcus Aureus (MRSA)35641
Microcephaly35962
Microscopic Colitis15015
Microtia53338
Migraine31742083382
Mitochondrial Disease10192193
Mixed Connective Tissue Disease (MCTD)2439252
Moebius Syndrome3811
Monoclonal gammopathy of undetermined significance (MGUS)26026
Mood Disorder9639135
Morgellons Disease (MD)628
Moyamoya Disease13821
MTHFR10712119
Mucopolysaccharidoses (MPS)85058
Multiple Endocrine Neoplasia (MEN)11415
Multiple Myeloma (MM)19442236
Multiple Sclerosis (MS)55546186172
Multiple System Atrophy (MSA)81018
Muscle Spasms60666
Muscle Tension Dysphonia (MTD)606
Muscular Dystrophy (MD)339522861
Myasthenia Gravis (MG)60896704
Mycobacterium Avium Complex (MAC)404
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab)22729
Myelodysplastic syndrome (MDS)11947166
Myelofibrosis21324
Myeloproliferative Neoplasms819
Myopathy501666
Myositis47855
Narcolepsy70444748
Nasal Polyps1218129
Neck Cancer505
Neck Surgery16521
Neuralgia24010250
Neuroblastoma3710
Neuroendocrine Cancer (NET)39241
Neurofibromatosis (NF)7328101
Neurogenic Bladder16539204
Neurogenic Bowel18422
Neuromyelitis optica (NMO)25041291
Neuropathy12961541450
Neutropenia313970
Niemann-Pick Disease6814
Non-Hodgkin's Lymphoma (NHL)18421205
Non-radiographic Axial Spondyloarthritis (nrAxSpA)33134
Nonspecific Interstitial Pneumonia (NSIP)404
Nontuberculous Mycobacterial (NTM)101
Noonan Syndrome (NS)3710
Obesity90571976
Obsessive Compulsive Disorder (OCD)602128730
Oppositional Defiant Disorder (ODD)42123165
Oral Cancer628
Organ Transplant29797394
Organic Acidemia (OA)65258
Osteoarthritis (OA)22292842513
Osteogenesis Imperfecta (OI)6346109
Osteomyelitis (OM)23629
Osteopenia24128269
Osteoporosis57178649
Ostomy29583378
Other, please specify, BBBBB,726265991
Ovarian Cancer19317210
Ovarian Cyst1404144
Overactive Bladder (OAB)15413167
Paget's606
Palmoplantar Pustulosis404
Pancreatic Cancer271744
Pancreatitis13224156
Paraganglioma527
Paralysis162150312
Paraneoplastic Syndrome6410
Parkinson's Disease (PD)505444949
Paroxysmal Nocturnal Hemoglobinuria (PNH)15039189
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS)172340
Pelvic Congestion Syndrome (PCS)18119
Pelvic Floor Dysfunction1023105
Pelvic Inflammatory Disease (PID)12113
Pemphigus / Pemphigoid20626232
Pendred Syndrome011
Periodic Limb Movement Disorder (PLMD)21324
Periodontitis (Gum Disease)27027
Perivascular Epithelioid Cell Tumour (PEComas)202
Periventricular Leukomalacia (PVL)21618
Persistent Genital Arousal Disorder202
Personality Disorder32638
Peyronie's Disease (Penile Fibrosis)101
Pfeiffer Syndrome033
Phenylketonuria (PKU)323567
Pheochromocytoma (PCC)19221
Pierre Robin Sequence (PRS)32023
Pituitary Tumor9811109
Plagiocephaly (Flat Head Syndrome)145
Plantar Fasciitis (PF)1505155
Pneumonia641276
Poland Syndrome437
Polio7815
Polychrondritis48250
Polycystic Ovarian Syndrome (PCOS)1079471126
Polycythemia Vera (PV)92395
Polymicrogyria (PMG)02222
Polymyalgia Rheumatica (PMR)26228
Polymyositis (PM)45247
Pompe Disease223153
Popliteal Artery Entrapment Syndrome (PAES)011
Porphyria25631
Post-Polio Syndrome (PPS)18321
Posttraumatic Stress Disorder (PTSD)23232412564
Precocious Puberty099
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI)13013
Premenstrual Dysphoric Disorder (PMDD)1132115
Primary Ciliary Dyskinesia (PCD)6814
Primary Hyperoxaluria (PH)61016
Primary Immunodeficiency (PID)378107485
Primary Peritoneal404
Progressive Multifocal Leukoencephalopathy (PML)224
Progressive Supranuclear Palsy (PSP)131023
Prolactinoma10010
Prostate Cancer9856154
Protein Deficiency12214
Proteinuria (Protein in Urine)10111
Prurigo Nodularis (PN)15116
Pseudobulbar Affect (PBA)15318
Psoriasis85077927
Psoriatic Arthritis (PsA)45244496
Ptosis (Drooping eye, Blepharoptosis), BBBBB,12416
Pulmonary Arterial Hypertension (PAH)9502361186
Pulmonary Embolism (PE)11814132
Pulmonary Fibrosis (PF)13638174
Pyloric Stenosis (Gastric Outlet Obstruction)5611
Pyoderma Gangrenosum (PG)19019
Raynaud's Syndrome73935774
Rectal Cancer (CRC)27532
Rectocele606
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,711889
Respiratory Syncytial Virus (RSV) Infection022
Restless Leg Syndrome (RLS)44931480
Retroperitoneal Fibrosis325
Rheumatoid Arthritis (RA)19802522232
Rickets (Osteomalacia)426
Rocky Mountain Spotted Fever (RMSF)617
Rosacea1202122
Rubella- German Measles202
Sacroiliac Joint Disease (SI)44044
Sarcoidosis21020230
Sarcoma741185
Schamberg's Disease303
Scheuermann's Kyphosis231033
Schinzel-Giedion Syndrome (SGS)033
Schizencephaly12324
Schizophrenia265198463
Sciatica26316279
Scleroderma31238350
Sclerosing Peritonitis (SP)202
Scoliosis638152790
Secondary Adrenal insufficiency10118119
Sensory Processing Disorder (SPD)89218307
Sepsis24428
Sexually Transmitted Disease909
Shaken Baby Syndrome (SBS)21214
Shingles (Herpes Zoster)77986
Short Bowel Syndrome (SBS, Short Gut), BBBBB,8834122
Shoulder Replacement707
Sickle Cell Disease (SCD)9504171367
Sickle Cell Disease (SCD): Sickle Cell Trait611980
Sinusitis22926255
Sjogren's Syndrome (SjS, SS), BBBBB,81831849
Skin Cancer491564
Skin Cancer- Melanoma14024164
Sleep Apnea (OSA)12532161469
Sleep Disorder17742219
Small for Gestational Age SGA)213
Small Intestinal Bacterial Overgrowth (SIBO)81687
Smith-Lemli-Opitz Syndrome (SLOS)167
Sotos Syndrome167
Spasmodic Dysphonia11011
Spastic Diplegia7512
Spasticity352459
Speech Impairment4074114
Spherocytosis12820
Sphincter of Oddi Dysfunction10212
Spina Bifida (SB)109123232
Spinal Cancer516
Spinal Cord8361731009
Spinal Muscular Atrophy (SMA)226402628
Sprengel Deformity314
Squamous Cell Carcinoma (SCC)71677
Stickler Syndrome131326
Stiff Person Syndrome (SPS)21223
Stomach Cancer201232
Stomach Ulcer12113134
Stroke359375734
Subcortical Band Heterotopia044
Subglottic Stenosis (SGS)11718
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome)49352
Syncope1216127
Synesthesia516
Syringomyelia821496
Tardive Dyskinesia (TD)58664
Tarlov Cysts24024
Tay Sachs (TSD)101828
Temporomandibular joint (TMJ)2688276
Tendonitis1094113
Testicular Cancer819
Thalassemia52658
Thoracic Outlet Syndrome (TOS)56359
Throat Cancer12315
Thrombocytopenia (TCP)36541
Thrombotic Thrombocytopenic Purpura (TTP)819
Thyroid Cancer29911310
Thyroid Eye Disease (TED)73275
Thyroid Nodule1274131
Thyroidectomy72375
Tics9413
Tongue Cancer112
Tooth Agenesis (Anodontia)404
Torticollis (Wry Neck)437
Tourette Syndrome (TS)6664130
Townes-Brocks Syndrome011
Toxic Synovitis202
Tracheobronchomalacia (TBM)426
Tracheomalacia51217
Transient Global Amnesia (TGA)3710
Traumatic Brain Injury (TBI)240147387
Treacher Collins syndrome (TCS)246
Trichotillomania (TTM)42446
Trigger Finger (Stenosing Tenosynovitis)13215
Trisomy 13 (Patau Syndrome)134
Trisomy 18 (Edwards Syndrome)077
Trisomy X (XXX)101121
Tuberculosis11415
Ulcerative Colitis (UC)852121973
Undifferentiated Connective Tissue Disease (UCTD)75782
Urea Cycle Disorder (UCD)261137
Urethral Prolapse303
Urinary Tract Infection (UTI)14814162
Urticaria (Hives)20624230
Usher Syndrome6612
Uterine Cancer35843
Uterine Fibroids2041205
Uterine Leiomyosarcoma516
Uterine Polyps11011
Uveitis611475
VACTERL Syndrome066
Vaginismus18119
Valosin Containing Protein (VCP)819
Varicose Veins45146
Vasculitis821496
Velopharyngeal Insufficiency (VPI)112
Vertebral Artery Dissection (VAD)11112
Vertigo20131232
Vision Impairment9764231399
Vitamin B12 Deficiency1144118
Vitamin D Deficiency25914273
Vitiligo851297
Vocal Cord Dysfunction (VCD)411253
Von Hippel-Lindau Syndrome426
Von Willebrand Disease (VWD)300157457
Vulvar Cancer10111
Vulvodynia14014
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,18820208
Wegener's Granulomatosis with Polyangiitis (GPA)29534
Wheelchair183816343472
Williams Syndrome (WS)83240
Wilson's Disease (hepatolenticular degeneration)132033
Wolf-Hirschhorn Syndrome (WHS)033
Wolff-Parkinson-White (WPW) Syndrome341246
X-Linked Hypophosphatemia (XLH)17623
Zoon vulvitis101

United States Canada UK Germany France Italy Spain
United States
Disease/Condition Patients Caregivers Total
ABCD Syndrome 2 2 4
Achalasia 33 5 38
Acne 225 17 242
Acoustic Neuroma (Vestibula Schwannoma) 16 5 21
Acromegaly 26 5 31
Adams-Oliver Syndrome (AOS) 1 3 4
Addiction 432 65 497
Addison's Disease (Adrenal insufficiency) 227 55 282
Adenomyosis 59 1 60
Adhesive Capsulitis (Frozen Shoulder) 25 5 30
Adrenal Cortical Carcinoma (ACC) 5 2 7
Agenesis of the Corpus Callosum (ACC) 7 28 35
Aicardi Syndrome 1 8 9
Alagille Syndrome (AS) 3 6 9
Albinism 19 19 38
Alkaptonuria 2 1 3
Allergies 1440 414 1854
Alopecia 115 19 134
Alpha 1 Antitrypsin Deficiency (A1AD) 84 15 99
Alternating Hemiplegia of Childhood (AHC) 0 2 2
Alzheimer's Disease (AD) 111 1271 1382
Amniotic Band Syndrome 2 0 2
Amplified Musculoskeletal Pain Syndrome 20 4 24
Amputation 73 58 131
Amyloidosis 23 4 27
Amyotrophic Lateral Sclerosis (ALS) 87 101 188
Anal Cancer 84 4 88
Anemia 1155 94 1249
Aneurysm 47 15 62
Anhidrosis (Hypohydrosis) 2 3 5
Ankylosing Spondylitis (AS) 461 37 498
Anosmia (loss of smell) 8 0 8
Anoxic Brain Injury 7 13 20
Antiphospholipid Syndrome (APS) 129 7 136
Antisynthetase Syndrome 4 0 4
Anxiety 6422 722 7144
Aortic Disease 93 34 127
Aphantasia 4 0 4
Aphasia 14 13 27
Aplastic Anemia (AA) 108 68 176
Appendix Cancer 12 0 12
Apraxia 6 59 65
Arachnoid Cyst 15 6 21
Arachnoiditis 25 3 28
Arteriovenous Malformation (AVM) 27 8 35
Arthrogryposis Multiplex Congenita (AMC) 19 33 52
Aspirin-like defect (ALD) 1 1 2
Asthma 3495 799 4294
Ataxia 120 72 192
Atrial Fibrillation (AFIB) 287 80 367
Atrophic Vaginitis 8 1 9
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,1923 1007 2930
Atypical Hemolytic Uremic Syndrome (aHUS) 92 30 122
Auditory Processing Disorder (APD) 30 24 54
Autism 529 1530 2059
Autoimmune Disease 288 38 326
Autoimmune Encephalitis (AE) 18 8 26
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,191 26 217
Barrett's Esophagus 88 8 96
Barth Syndrome (BTHS) 3 9 12
Bartonella 23 3 26
Basal Cell Carcinoma (BCC) 40 3 43
Batten Disease 2 23 25
Beckwith-Wiedemann Syndrome (BWS) 0 4 4
Behcet's Disease (BD) 60 10 70
Bell's Palsy 21 7 28
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,41 10 51
Beta Thalassemia (Cooley s Anemia) 42 9 51
Bile Acid Malabsorption (BAD) 7 0 7
Bile Duct Cancer (Cholangiocarcinoma) 11 6 17
Bipolar 1869 369 2238
Bladder Cancer 53 18 71
Blood Cancer 29 10 39
Blood Clot 128 18 146
Blood Clotting Disorder 97 14 111
Blount's Disease 1 1 2
Bone Cancer 42 14 56
Borderline Personality Disorder (BPD) 426 25 451
Brain Aneurysm 60 12 72
Brain Cancer 49 45 94
Brain Damage 30 58 88
Brain Tumor 101 67 168
BRCA Mutation 26 0 26
Breast Cancer (BC) 1046 104 1150
Breast Cancer in Men 2 0 2
Breast Implant Illness 1 0 1
Bronchiectasis 70 8 78
Bronchitis 128 10 138
Bronchopulmonary Dysplasia (BPD) 0 7 7
Bulging Disc 154 8 162
Bursitis 104 4 108
Calcinosis 6 1 7
Calciphylaxis 2 2 4
Campomelic Dysplasia 0 2 2
Cancer 3721 1265 4986
Candidiasis (Yeast Infection) 34 1 35
Capillary Lymphatic Venous Malformations (CLVMs) 0 1 1
Carcinoid Cancer 10 0 10
Carcinoma 36 2 38
Cardiofaciocutaneous Syndrome (CFC syndrome) 2 4 6
Carnitine Deficiency 7 9 16
Caroli Disease 2 6 8
Carpal Tunnel Syndrome (CTS) 356 15 371
Castleman Disease (CD) 5 2 7
Cauda Equina Syndrome 5 1 6
Celiac Disease (CCD) 569 146 715
Cellulitis 15 5 20
Central Pain Syndrome (CPS) 16 0 16
Cerebellar Atrophy 1 2 3
Cerebral Amyloid Angiopathy 1 1 2
Cerebral Cavernous Malformations (CCMs) 1 2 3
Cerebral Palsy (CP) 186 578 764
Cervical Cancer 76 7 83
Cervical Dystonia 45 3 48
Charge Syndrome 3 8 11
Chiari Malformation (CM) 310 103 413
Chilblains (Pernio) 5 0 5
Chronic Fatigue Syndrome (CFS, ME), BBBBB,730 22 752
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 145 13 158
Chronic Intestinal Pseudo-obstruction (CIPO) 22 8 30
Chronic obstructive pulmonary disease (COPD) 1032 473 1505
Chronic Pain 1839 189 2028
Chronic Venous Insufficiency (CVI) 40 18 58
Cleft 11 30 41
Clostridium difficile (C Diff) 43 6 49
Clubfoot 14 20 34
Cluster Headache 227 34 261
Coffin-Lowry Syndrome (CLS) 0 1 1
Cognitive Impairment (CI) 47 40 87
Colon Cancer (CRC) 91 27 118
Colon Polyps 17 0 17
Colonic Inertia 16 0 16
Color Blind 0 1 1
Colorectal Cancer (CRC) 71 9 80
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,288 29 317
Congenital Adrenal Hyperplasia (CAH) 9 13 22
Congenital Central Hypoventilation Syndrome (CCHS) 1 5 6
Congenital Myopathy 14 7 21
Congenital Sucrase-Isomaltase Deficiency (CSID) 6 12 18
Constipation 226 62 288
Conversion Disorder (CD) 16 1 17
Coronavirus (COVID-19) 218 25 243
Cortical Dysplasia 1 5 6
Costochondritis 61 2 63
Cowden Syndrome (CS) 4 3 7
Craniocervical Instability (CCI) 51 2 53
Craniosynostosis 5 20 25
Crohn's Disease (CD) 1559 258 1817
Cushing's Disease (CS) 203 13 216
Cyclic Vomiting Syndrome (CVS) 178 65 243
Cystic Fibrosis (CF) 779 981 1760
Cystic Hygroma 0 2 2
Cystinosis 2 2 4
Cytomegalovirus (CMV) 17 10 27
Dandy Walker Syndrome (DWS) 5 18 23
Darier Disease (DD Keratosis Follicularis) 4 1 5
Deep Vein Thrombosis (DVT) 137 13 150
Degenerative Disc Disease (DDD) 987 78 1065
Deletion Duplication Syndrome 36 261 297
Delta-Storage Pool Deficiency 4 4 8
Depression (MDD) 6697 636 7333
Dercum's Disease (adiposis dolorosa) 23 1 24
Dermatomyositis (DM) 83 12 95
Desmoid Tumor 26 3 29
Developmental Delay (DD) 39 336 375
Diabetes (DM) 4931 2171 7102
Disabled 32 33 65
Disruptive Mood Dysregulation Disorder (DMDD) 12 17 29
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,79 2 81
Diverticulitis 172 14 186
Down Syndrome (DS) 9 151 160
Dry Mouth 24 1 25
Duodenitis 6 1 7
Dupuytren's Contracture 19 2 21
Dwarfism 28 64 92
Dysarthria (Slurred Speech) 8 6 14
Dysautonomia 1203 127 1330
Dyskeratosis Congenita 1 4 5
Dyslexia 52 29 81
Dysmenorrhea (Painful Menstruation) 52 2 54
Dysphagia (Difficulty Swallowing) 87 43 130
Dystonia 95 32 127
Ear Cancer 1 0 1
Eating Disorder 285 31 316
Eczema (Atopic Dermatitis) 710 127 837
Edema 77 17 94
Ehlers-Danlos Syndrome (EDS) 1346 172 1518
Elephantiasis (Lymphatic Filariasis) 4 2 6
Empty Sella Syndrome (ESS) 17 0 17
Encephalitis 13 11 24
Encephalocele 0 3 3
Endometrial Cancer 46 7 53
Endometriosis 892 31 923
Enlarged Spleen (Splenomegaly) 12 1 13
Eosinophilic Colitis (EC) 17 7 24
Eosinophilic Esophagitis (EOE) 268 268 536
Eosinophilic Gasteroenteritis (EG) 40 18 58
Epicondylitis (Tennis Elbow) 13 0 13
Epidermolysis Bullosa (EB) 7 6 13
Epilepsy 1203 2196 3399
Epithelial Basement Membrane Dystrophy 4 0 4
Epstein Barr Syndrome (EBV) 115 4 119
Erb's Palsy 3 3 6
Erectile Dysfunction (ED) 48 9 57
Erythema Nodosum 8 0 8
Erythromelalgia 25 1 26
Esophageal Atresia (EA) 3 16 19
Esophageal Cancer 14 9 23
Esophageal Varices 3 1 4
Essential Thrombocythemia 15 3 18
Essential Tremor 98 21 119
Ewing's Sarcoma 19 4 23
Exocrine Pancreatic Insufficiency (EPI) 55 7 62
Eye Cancer 10 5 15
Fabry disease 230 40 270
Failure to Thrive (FTT) 13 42 55
Familial Adenomatous Polyposis (FAP) 52 9 61
Familial Hypercholesterolemia (FH) 27 8 35
Familial Mediterranean Fever (FMF) 7 6 13
Fatty Oxidation Disorder (FAOD) 29 73 102
Fetal Alcohol Syndrome (FAS) 4 27 31
Fibrocystic Breasts 44 2 46
Fibrodysplasia Ossificans Progressiva (FOP) 7 6 13
Fibromuscular Dysplasia (FMD) 20 2 22
Fibromyalgia (FM) 3218 189 3407
Fibrosing Mediastinitis 5 0 5
Fibrous Dysplasia 14 3 17
Fistula 38 9 47
Foot Drop 47 6 53
FOXG1 Syndrome 1 27 28
Fragile X Syndrome (FXS) 21 62 83
Friedreich's Ataxia (FA) 22 19 41
Functional Neurological Disorder (FND) 47 8 55
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 8 2 10
Galactosemia 0 5 5
Gall Stones 63 4 67
Ganglioneuroblastoma 0 2 2
Gastric Bypass 49 2 51
Gastric Dysmotility 113 13 126
Gastritis 212 18 230
Gastroesophageal Reflux Disease (GERD) 1730 254 1984
Gastrointestinal Stromal Tumor (GIST) 23 6 29
Gastroparesis (GP) 815 102 917
Gastroschisis 7 7 14
Gastrostomy Tube (G-tube) 73 48 121
Gaucher Disease (GD) 65 28 93
Gender Dysphoria 57 2 59
Giant Cell Arteritis (GCA) 7 2 9
Glucose Transporter Deficiency (GLUT1DS) 1 3 4
Gluten Intolerance 73 5 78
Glycogen Storage Disease (GSD) 13 8 21
Goiter 29 2 31
Goldenhar Syndrome 2 4 6
Gout 167 39 206
Graft Versus Host Disease (GVHD) 46 13 59
Granular Cell Tumors 1 0 1
Granuloma Annulare (GA) 15 1 16
Grave's Disease (GD) 269 22 291
Guillain-Barre Syndrome (GBS) 69 5 74
Hansen's Disease (Leprosy) 1 0 1
Hashimoto's Disease (HT) 1146 57 1203
Head and Neck Cancer 15 2 17
Headache 288 18 306
Hearing Aid 148 123 271
Hearing Loss 410 223 633
Heart Disease 1777 1056 2833
HELLP Syndrome 3 0 3
Hemangioma 11 7 18
Hemihyperplasia 3 4 7
Hemochromatosis (Iron Overload) 100 16 116
Hemophilia 896 964 1860
Hemorrhoids 65 3 68
Hepatitis 377 81 458
Hereditary alpha-tryptasemia (H?T) 10 1 11
Hereditary Angioedema (HAE) 64 13 77
Hereditary hemorrhagic telangiectasia (HHT) 15 6 21
Hereditary Spastic Paraparesis (HSP) 56 8 64
Hereditary Spastic Paraplegia (HSP) 34 16 50
Hernia 245 31 276
Herpes (HSV) 182 8 190
Hidradenitis Suppurativa (HS) 397 13 410
High Blood Pressure (Hypertension, HBP), BBBBB,4043 809 4852
High Cholesterol (Hyperlipidemia) 1658 256 1914
Hip Dysplasia 57 33 90
Hip Replacement 82 22 104
Hirschsprung's Disease (HD, HSCR), BBBBB,10 44 54
Hirsutism 15 0 15
HIV 895 103 998
Hodgkins Lymphoma 104 7 111
Holoprosencephaly (HPE) 0 9 9
Homocystinuria (HCU) 2 6 8
Horner Syndrome 7 4 11
Human Growth Hormone Deficiency (GHD) 133 195 328
Human Papillomavirus (Human Papillomavirus (HPV) 92 2 94
Huntington's Disease (HD) 192 323 515
Hydrocephalus 123 181 304
Hyper-IgA Syndrome 0 1 1
Hyperaldosteronism 7 0 7
Hyperemesis Gravidarum (HG, Morning Sickness), BBBBB,9 1 10
Hypereosinophilic Syndrome (HES) 13 4 17
Hyperhidrosis 77 1 78
Hyperkalemia 18 3 21
Hypermobility Syndrome 181 19 200
Hyperoxaluria 2 1 3
Hyperparathyroidism 110 11 121
Hypersomnia 149 1 150
Hyperthyroidism 181 14 195
Hypocalcemia 18 2 20
Hypoglycemia (Low Blood Sugar) 247 29 276
Hypohidrotic Ectodermal Dysplasia (HED) 2 7 9
Hypokalemia 75 3 78
Hypokalemic Periodic Paralysis 30 10 40
Hyponatremia 8 0 8
Hypoparathyroidism 134 15 149
Hypophosphatasia (HPP) 14 2 16
Hypoplasia of the Corpus Callosum 3 4 7
Hypothyroidism 2363 182 2545
Hypotonia 21 124 145
Hypoxic Ischemic Encephalopathy (HIE) 7 35 42
Hysterectomy 96 4 100
Ichthyosis 6 3 9
Immune Thrombocytopenic Purpura (ITP) 134 17 151
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 14 3 17
Incontinence 186 49 235
Incontinentia Pigmenti (IP) 4 25 29
Infertility 79 2 81
Insomnia 844 64 908
Intellectual Disability 29 138 167
Intermittent Explosive Disorder (IED) 7 7 14
Interstitial Cystitis (IC) 292 13 305
Interstitial Lung Disease (ILD) 112 22 134
Intracranial Hemorrhage (Brain Bleeds) 6 4 10
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,227 17 244
intracranial Pressure (ICP) 6 1 7
Iritis 21 1 22
Irritable Bowel Syndrome (IBS) 1452 77 1529
Ischemic Colitis 2 0 2
Jansen's Metaphyseal Chondrodysplasia 1 1 2
Juvenile Arthritis (JA) 130 168 298
Kabuki Syndrome 0 5 5
Kaposi Sarcoma (KS) 4 1 5
Kawasaki Disease 3 4 7
Keratosis Pilaris (follicular keratosis) 25 3 28
Kidney Disease 1303 481 1784
Klinefelter Syndrome (XXY Syndrome) 1 2 3
Klippel-Feil Syndrome (KFS) 8 8 16
Klippel-Trenaunay Syndrome (KTS) 6 3 9
Knee Replacement 91 18 109
Lactose Intolerance 75 12 87
Lamb-Shaffer Syndrome 0 1 1
Lambert-Eaton myasthenic syndrome (LEMS) 20 1 21
Landau Kleffner Syndrome (LKS) 1 5 6
Langerhans Cell Histiocytosis (LCH) 8 7 15
Larsen syndrome 2 2 4
Laryngeal Cancer 1 2 3
Laryngomalacia 3 19 22
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 1 2 3
Learning Disability 46 78 124
Legg-Calve-Perthes Disease (LCPD) 10 8 18
Leiomyosarcoma 12 0 12
LEOPARD Syndrome 3 1 4
Leukemia 246 91 337
Leukocytosis 13 0 13
Leukodystrophy 17 25 42
Leukopenia 9 1 10
Lichen Planus 35 0 35
Lichen Sclerosis (LS) 65 4 69
Lipedema 38 4 42
Lipodystrophy 6 1 7
Liposarcoma 17 0 17
Lissencephaly 0 23 23
Livedo Reticularis (LR) 12 1 13
Liver Cancer 40 23 63
Liver Disease (not hepatitis) 544 144 688
Loeys Dietz Syndrome 2 1 3
Loin Pain Hematuria Syndrome (LPHS) 12 0 12
Loss of Mobility 42 36 78
Low Blood Pressure (Hypotension) 234 12 246
Low Testosterone 42 3 45
Lung Cancer 266 116 382
Lung Disease 206 126 332
Lupus 2662 236 2898
Lyme Disease 278 27 305
Lymphedema 202 24 226
Lymphocytic Colitis 23 3 26
Lymphoma 54 12 66
Lymphoproliferative Disease (LPD) 5 6 11
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 16 2 18
Macular Degeneration 143 42 185
Mal de debarquement Syndrome (MdDS) 5 0 5
Malabsorption 31 1 32
Malignant Hyperthermia (MH) 9 2 11
Maple Syrup Urine Disease (MSUD) 7 11 18
Marfan Syndrome (MFS) 31 15 46
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,503 66 569
May Thurner Syndrome 22 1 23
Mayer-Rokitansky-K ster-Hauser (MRKH) syndrome 2 0 2
McCune-Albright Syndrome (MAS) 10 2 12
Median arcuate ligament syndrome (MALS) 66 1 67
Memory Loss 83 44 127
Meniere's Disease (MD) 97 9 106
Menopause 84 2 86
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,48 3 51
Mental Illness 123 62 185
Mesothelioma 2 3 5
Metabolic Syndrome 43 13 56
Metatarsalgia 3 0 3
Methicillin-Resistant Staphylococcus Aureus (MRSA) 35 6 41
Microcephaly 3 59 62
Microscopic Colitis 15 0 15
Microtia 5 33 38
Migraine 3174 208 3382
Mitochondrial Disease 101 92 193
Mixed Connective Tissue Disease (MCTD) 243 9 252
Moebius Syndrome 3 8 11
Monoclonal gammopathy of undetermined significance (MGUS) 26 0 26
Mood Disorder 96 39 135
Morgellons Disease (MD) 6 2 8
Moyamoya Disease 13 8 21
MTHFR 107 12 119
Mucopolysaccharidoses (MPS) 8 50 58
Multiple Endocrine Neoplasia (MEN) 11 4 15
Multiple Myeloma (MM) 194 42 236
Multiple Sclerosis (MS) 5554 618 6172
Multiple System Atrophy (MSA) 8 10 18
Muscle Spasms 60 6 66
Muscle Tension Dysphonia (MTD) 6 0 6
Muscular Dystrophy (MD) 339 522 861
Myasthenia Gravis (MG) 608 96 704
Mycobacterium Avium Complex (MAC) 4 0 4
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 22 7 29
Myelodysplastic syndrome (MDS) 119 47 166
Myelofibrosis 21 3 24
Myeloproliferative Neoplasms 8 1 9
Myopathy 50 16 66
Myositis 47 8 55
Narcolepsy 704 44 748
Nasal Polyps 121 8 129
Neck Cancer 5 0 5
Neck Surgery 16 5 21
Neuralgia 240 10 250
Neuroblastoma 3 7 10
Neuroendocrine Cancer (NET) 39 2 41
Neurofibromatosis (NF) 73 28 101
Neurogenic Bladder 165 39 204
Neurogenic Bowel 18 4 22
Neuromyelitis optica (NMO) 250 41 291
Neuropathy 1296 154 1450
Neutropenia 31 39 70
Niemann-Pick Disease 6 8 14
Non-Hodgkin's Lymphoma (NHL) 184 21 205
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 33 1 34
Nonspecific Interstitial Pneumonia (NSIP) 4 0 4
Nontuberculous Mycobacterial (NTM) 1 0 1
Noonan Syndrome (NS) 3 7 10
Obesity 905 71 976
Obsessive Compulsive Disorder (OCD) 602 128 730
Oppositional Defiant Disorder (ODD) 42 123 165
Oral Cancer 6 2 8
Organ Transplant 297 97 394
Organic Acidemia (OA) 6 52 58
Osteoarthritis (OA) 2229 284 2513
Osteogenesis Imperfecta (OI) 63 46 109
Osteomyelitis (OM) 23 6 29
Osteopenia 241 28 269
Osteoporosis 571 78 649
Ostomy 295 83 378
Other, please specify, BBBBB,726 265 991
Ovarian Cancer 193 17 210
Ovarian Cyst 140 4 144
Overactive Bladder (OAB) 154 13 167
Paget's 6 0 6
Palmoplantar Pustulosis 4 0 4
Pancreatic Cancer 27 17 44
Pancreatitis 132 24 156
Paraganglioma 5 2 7
Paralysis 162 150 312
Paraneoplastic Syndrome 6 4 10
Parkinson's Disease (PD) 505 444 949
Paroxysmal Nocturnal Hemoglobinuria (PNH) 150 39 189
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 17 23 40
Pelvic Congestion Syndrome (PCS) 18 1 19
Pelvic Floor Dysfunction 102 3 105
Pelvic Inflammatory Disease (PID) 12 1 13
Pemphigus / Pemphigoid 206 26 232
Pendred Syndrome 0 1 1
Periodic Limb Movement Disorder (PLMD) 21 3 24
Periodontitis (Gum Disease) 27 0 27
Perivascular Epithelioid Cell Tumour (PEComas) 2 0 2
Periventricular Leukomalacia (PVL) 2 16 18
Persistent Genital Arousal Disorder 2 0 2
Personality Disorder 32 6 38
Peyronie's Disease (Penile Fibrosis) 1 0 1
Pfeiffer Syndrome 0 3 3
Phenylketonuria (PKU) 32 35 67
Pheochromocytoma (PCC) 19 2 21
Pierre Robin Sequence (PRS) 3 20 23
Pituitary Tumor 98 11 109
Plagiocephaly (Flat Head Syndrome) 1 4 5
Plantar Fasciitis (PF) 150 5 155
Pneumonia 64 12 76
Poland Syndrome 4 3 7
Polio 7 8 15
Polychrondritis 48 2 50
Polycystic Ovarian Syndrome (PCOS) 1079 47 1126
Polycythemia Vera (PV) 92 3 95
Polymicrogyria (PMG) 0 22 22
Polymyalgia Rheumatica (PMR) 26 2 28
Polymyositis (PM) 45 2 47
Pompe Disease 22 31 53
Popliteal Artery Entrapment Syndrome (PAES) 0 1 1
Porphyria 25 6 31
Post-Polio Syndrome (PPS) 18 3 21
Posttraumatic Stress Disorder (PTSD) 2323 241 2564
Precocious Puberty 0 9 9
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 13 0 13
Premenstrual Dysphoric Disorder (PMDD) 113 2 115
Primary Ciliary Dyskinesia (PCD) 6 8 14
Primary Hyperoxaluria (PH) 6 10 16
Primary Immunodeficiency (PID) 378 107 485
Primary Peritoneal 4 0 4
Progressive Multifocal Leukoencephalopathy (PML) 2 2 4
Progressive Supranuclear Palsy (PSP) 13 10 23
Prolactinoma 10 0 10
Prostate Cancer 98 56 154
Protein Deficiency 12 2 14
Proteinuria (Protein in Urine) 10 1 11
Prurigo Nodularis (PN) 15 1 16
Pseudobulbar Affect (PBA) 15 3 18
Psoriasis 850 77 927
Psoriatic Arthritis (PsA) 452 44 496
Ptosis (Drooping eye, Blepharoptosis), BBBBB,12 4 16
Pulmonary Arterial Hypertension (PAH) 950 236 1186
Pulmonary Embolism (PE) 118 14 132
Pulmonary Fibrosis (PF) 136 38 174
Pyloric Stenosis (Gastric Outlet Obstruction) 5 6 11
Pyoderma Gangrenosum (PG) 19 0 19
Raynaud's Syndrome 739 35 774
Rectal Cancer (CRC) 27 5 32
Rectocele 6 0 6
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,71 18 89
Respiratory Syncytial Virus (RSV) Infection 0 2 2
Restless Leg Syndrome (RLS) 449 31 480
Retroperitoneal Fibrosis 3 2 5
Rheumatoid Arthritis (RA) 1980 252 2232
Rickets (Osteomalacia) 4 2 6
Rocky Mountain Spotted Fever (RMSF) 6 1 7
Rosacea 120 2 122
Rubella- German Measles 2 0 2
Sacroiliac Joint Disease (SI) 44 0 44
Sarcoidosis 210 20 230
Sarcoma 74 11 85
Schamberg's Disease 3 0 3
Scheuermann's Kyphosis 23 10 33
Schinzel-Giedion Syndrome (SGS) 0 3 3
Schizencephaly 1 23 24
Schizophrenia 265 198 463
Sciatica 263 16 279
Scleroderma 312 38 350
Sclerosing Peritonitis (SP) 2 0 2
Scoliosis 638 152 790
Secondary Adrenal insufficiency 101 18 119
Sensory Processing Disorder (SPD) 89 218 307
Sepsis 24 4 28
Sexually Transmitted Disease 9 0 9
Shaken Baby Syndrome (SBS) 2 12 14
Shingles (Herpes Zoster) 77 9 86
Short Bowel Syndrome (SBS, Short Gut), BBBBB,88 34 122
Shoulder Replacement 7 0 7
Sickle Cell Disease (SCD) 950 417 1367
Sickle Cell Disease (SCD): Sickle Cell Trait 61 19 80
Sinusitis 229 26 255
Sjogren's Syndrome (SjS, SS), BBBBB,818 31 849
Skin Cancer 49 15 64
Skin Cancer- Melanoma 140 24 164
Sleep Apnea (OSA) 1253 216 1469
Sleep Disorder 177 42 219
Small for Gestational Age SGA) 2 1 3
Small Intestinal Bacterial Overgrowth (SIBO) 81 6 87
Smith-Lemli-Opitz Syndrome (SLOS) 1 6 7
Sotos Syndrome 1 6 7
Spasmodic Dysphonia 11 0 11
Spastic Diplegia 7 5 12
Spasticity 35 24 59
Speech Impairment 40 74 114
Spherocytosis 12 8 20
Sphincter of Oddi Dysfunction 10 2 12
Spina Bifida (SB) 109 123 232
Spinal Cancer 5 1 6
Spinal Cord 836 173 1009
Spinal Muscular Atrophy (SMA) 226 402 628
Sprengel Deformity 3 1 4
Squamous Cell Carcinoma (SCC) 71 6 77
Stickler Syndrome 13 13 26
Stiff Person Syndrome (SPS) 21 2 23
Stomach Cancer 20 12 32
Stomach Ulcer 121 13 134
Stroke 359 375 734
Subcortical Band Heterotopia 0 4 4
Subglottic Stenosis (SGS) 11 7 18
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 49 3 52
Syncope 121 6 127
Synesthesia 5 1 6
Syringomyelia 82 14 96
Tardive Dyskinesia (TD) 58 6 64
Tarlov Cysts 24 0 24
Tay Sachs (TSD) 10 18 28
Temporomandibular joint (TMJ) 268 8 276
Tendonitis 109 4 113
Testicular Cancer 8 1 9
Thalassemia 52 6 58
Thoracic Outlet Syndrome (TOS) 56 3 59
Throat Cancer 12 3 15
Thrombocytopenia (TCP) 36 5 41
Thrombotic Thrombocytopenic Purpura (TTP) 8 1 9
Thyroid Cancer 299 11 310
Thyroid Eye Disease (TED) 73 2 75
Thyroid Nodule 127 4 131
Thyroidectomy 72 3 75
Tics 9 4 13
Tongue Cancer 1 1 2
Tooth Agenesis (Anodontia) 4 0 4
Torticollis (Wry Neck) 4 3 7
Tourette Syndrome (TS) 66 64 130
Townes-Brocks Syndrome 0 1 1
Toxic Synovitis 2 0 2
Tracheobronchomalacia (TBM) 4 2 6
Tracheomalacia 5 12 17
Transient Global Amnesia (TGA) 3 7 10
Traumatic Brain Injury (TBI) 240 147 387
Treacher Collins syndrome (TCS) 2 4 6
Trichotillomania (TTM) 42 4 46
Trigger Finger (Stenosing Tenosynovitis) 13 2 15
Trisomy 13 (Patau Syndrome) 1 3 4
Trisomy 18 (Edwards Syndrome) 0 7 7
Trisomy X (XXX) 10 11 21
Tuberculosis 11 4 15
Ulcerative Colitis (UC) 852 121 973
Undifferentiated Connective Tissue Disease (UCTD) 75 7 82
Urea Cycle Disorder (UCD) 26 11 37
Urethral Prolapse 3 0 3
Urinary Tract Infection (UTI) 148 14 162
Urticaria (Hives) 206 24 230
Usher Syndrome 6 6 12
Uterine Cancer 35 8 43
Uterine Fibroids 204 1 205
Uterine Leiomyosarcoma 5 1 6
Uterine Polyps 11 0 11
Uveitis 61 14 75
VACTERL Syndrome 0 6 6
Vaginismus 18 1 19
Valosin Containing Protein (VCP) 8 1 9
Varicose Veins 45 1 46
Vasculitis 82 14 96
Velopharyngeal Insufficiency (VPI) 1 1 2
Vertebral Artery Dissection (VAD) 11 1 12
Vertigo 201 31 232
Vision Impairment 976 423 1399
Vitamin B12 Deficiency 114 4 118
Vitamin D Deficiency 259 14 273
Vitiligo 85 12 97
Vocal Cord Dysfunction (VCD) 41 12 53
Von Hippel-Lindau Syndrome 4 2 6
Von Willebrand Disease (VWD) 300 157 457
Vulvar Cancer 10 1 11
Vulvodynia 14 0 14
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,188 20 208
Wegener's Granulomatosis with Polyangiitis (GPA) 29 5 34
Wheelchair 1838 1634 3472
Williams Syndrome (WS) 8 32 40
Wilson's Disease (hepatolenticular degeneration) 13 20 33
Wolf-Hirschhorn Syndrome (WHS) 0 3 3
Wolff-Parkinson-White (WPW) Syndrome 34 12 46
X-Linked Hypophosphatemia (XLH) 17 6 23
Zoon vulvitis 1 0 1
Canada
Disease/Condition Patients Caregivers Total
Achalasia 1 0 1
Acne 9 0 9
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 2 0 2
Addiction 12 0 12
Addison's Disease (Adrenal insufficiency) 14 1 15
Adenomyosis 4 0 4
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Agenesis of the Corpus Callosum (ACC) 1 1 2
Albinism 1 1 2
Allergies 65 11 76
Alopecia 16 0 16
Alpha 1 Antitrypsin Deficiency (A1AD) 3 0 3
Alzheimer's Disease (AD) 0 10 10
Amplified Musculoskeletal Pain Syndrome 1 0 1
Amputation 1 0 1
Amyloidosis 1 0 1
Amyotrophic Lateral Sclerosis (ALS) 3 0 3
Anal Cancer 5 0 5
Anemia 41 0 41
Aneurysm 2 1 3
Ankylosing Spondylitis (AS) 35 3 38
Antiphospholipid Syndrome (APS) 8 0 8
Anxiety 265 17 282
Aortic Disease 4 2 6
Aphasia 1 0 1
Aplastic Anemia (AA) 1 1 2
Appendix Cancer 1 0 1
Apraxia 0 5 5
Arachnoid Cyst 0 1 1
Arachnoiditis 1 0 1
Arthrogryposis Multiplex Congenita (AMC) 4 2 6
Asthma 118 12 130
Ataxia 5 1 6
Atrial Fibrillation (AFIB) 4 2 6
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,90 25 115
Atypical Hemolytic Uremic Syndrome (aHUS) 2 3 5
Auditory Processing Disorder (APD) 4 1 5
Autism 39 32 71
Autoimmune Disease 12 0 12
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,7 1 8
Barth Syndrome (BTHS) 0 1 1
Basal Cell Carcinoma (BCC) 2 0 2
Batten Disease 0 3 3
Behcet's Disease (BD) 3 0 3
Bell's Palsy 2 0 2
Beta Thalassemia (Cooley s Anemia) 1 0 1
Bile Acid Malabsorption (BAD) 1 0 1
Bipolar 27 3 30
Bladder Cancer 1 0 1
Blood Cancer 1 0 1
Blood Clot 4 0 4
Blood Clotting Disorder 4 0 4
Bone Cancer 5 1 6
Borderline Personality Disorder (BPD) 40 1 41
Brain Aneurysm 3 0 3
Brain Cancer 0 2 2
Brain Damage 2 1 3
Brain Tumor 3 2 5
BRCA Mutation 1 0 1
Breast Cancer (BC) 29 5 34
Bronchiectasis 1 0 1
Bronchitis 3 0 3
Bulging Disc 7 1 8
Bursitis 7 0 7
Cancer 96 21 117
Candidiasis (Yeast Infection) 1 0 1
Carcinoid Cancer 1 0 1
Carcinoma 1 0 1
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 6 0 6
Castleman Disease (CD) 1 0 1
Celiac Disease (CCD) 28 3 31
Cerebral Palsy (CP) 6 6 12
Cervical Cancer 2 0 2
Cervical Dystonia 1 0 1
Charge Syndrome 0 1 1
Chiari Malformation (CM) 3 3 6
Chronic Fatigue Syndrome (CFS, ME), BBBBB,50 0 50
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 3 1 4
Chronic Intestinal Pseudo-obstruction (CIPO) 2 0 2
Chronic obstructive pulmonary disease (COPD) 33 6 39
Chronic Pain 71 7 78
Chronic Venous Insufficiency (CVI) 2 1 3
Clostridium difficile (C Diff) 3 0 3
Clubfoot 1 1 2
Cluster Headache 11 0 11
Cognitive Impairment (CI) 2 0 2
Colon Cancer (CRC) 3 1 4
Colon Polyps 2 0 2
Colonic Inertia 1 0 1
Color Blind 1 0 1
Colorectal Cancer (CRC) 2 0 2
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,10 0 10
Constipation 8 1 9
Conversion Disorder (CD) 1 0 1
Coronavirus (COVID-19) 4 0 4
Cortical Dysplasia 0 1 1
Costochondritis 4 0 4
Craniocervical Instability (CCI) 2 0 2
Craniosynostosis 0 3 3
Crohn's Disease (CD) 164 10 174
Cushing's Disease (CS) 14 1 15
Cyclic Vomiting Syndrome (CVS) 12 3 15
Cystic Fibrosis (CF) 63 29 92
Cystic Hygroma 1 0 1
Deep Vein Thrombosis (DVT) 3 0 3
Degenerative Disc Disease (DDD) 42 0 42
Deletion Duplication Syndrome 0 9 9
Depression (MDD) 265 13 278
Dermatomyositis (DM) 3 0 3
Desmoid Tumor 1 0 1
Developmental Delay (DD) 2 9 11
Diabetes (DM) 140 28 168
Disabled 4 0 4
Disruptive Mood Dysregulation Disorder (DMDD) 0 1 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,8 0 8
Diverticulitis 8 1 9
Down Syndrome (DS) 1 1 2
Duodenitis 1 0 1
Dupuytren's Contracture 2 0 2
Dwarfism 2 0 2
Dysarthria (Slurred Speech) 1 0 1
Dysautonomia 42 4 46
Dyslexia 1 1 2
Dysmenorrhea (Painful Menstruation) 5 2 7
Dysphagia (Difficulty Swallowing) 4 0 4
Dystonia 3 0 3
Eating Disorder 22 0 22
Eczema (Atopic Dermatitis) 37 3 40
Edema 2 0 2
Ehlers-Danlos Syndrome (EDS) 71 1 72
Encephalitis 3 0 3
Endometrial Cancer 2 0 2
Endometriosis 52 1 53
Eosinophilic Esophagitis (EOE) 9 3 12
Eosinophilic Gasteroenteritis (EG) 2 0 2
Epilepsy 31 53 84
Epstein Barr Syndrome (EBV) 1 0 1
Erectile Dysfunction (ED) 3 0 3
Erythema Nodosum 1 0 1
Erythromelalgia 1 0 1
Esophageal Atresia (EA) 0 1 1
Essential Thrombocythemia 1 0 1
Essential Tremor 4 0 4
Ewing's Sarcoma 2 0 2
Eye Cancer 1 0 1
Fabry disease 3 1 4
Failure to Thrive (FTT) 0 2 2
Familial Adenomatous Polyposis (FAP) 5 0 5
Familial Mediterranean Fever (FMF) 1 0 1
Fatty Oxidation Disorder (FAOD) 0 2 2
Fetal Alcohol Syndrome (FAS) 0 3 3
Fibrocystic Breasts 1 0 1
Fibrodysplasia Ossificans Progressiva (FOP) 1 1 2
Fibromyalgia (FM) 158 1 159
Fibrous Dysplasia 0 1 1
Fistula 3 0 3
Foot Drop 1 0 1
FOXG1 Syndrome 0 1 1
Fragile X Syndrome (FXS) 0 3 3
Friedreich's Ataxia (FA) 1 2 3
Functional Neurological Disorder (FND) 5 0 5
Gall Stones 5 0 5
Gastric Dysmotility 4 0 4
Gastritis 6 0 6
Gastroesophageal Reflux Disease (GERD) 47 2 49
Gastroparesis (GP) 30 1 31
Gastrostomy Tube (G-tube) 1 0 1
Gaucher Disease (GD) 1 1 2
Gender Dysphoria 4 0 4
Glucose Transporter Deficiency (GLUT1DS) 0 2 2
Gluten Intolerance 3 0 3
Gout 4 1 5
Graft Versus Host Disease (GVHD) 2 0 2
Granuloma Annulare (GA) 1 0 1
Grave's Disease (GD) 6 0 6
Guillain-Barre Syndrome (GBS) 5 0 5
Hashimoto's Disease (HT) 49 1 50
Headache 16 1 17
Hearing Aid 10 2 12
Hearing Loss 18 3 21
Heart Disease 41 25 66
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 4 1 5
Hemophilia 13 12 25
Hemorrhoids 2 0 2
Hepatitis 19 2 21
Hereditary alpha-tryptasemia (H?T) 1 0 1
Hereditary Angioedema (HAE) 8 1 9
Hereditary Spastic Paraparesis (HSP) 6 0 6
Hereditary Spastic Paraplegia (HSP) 6 0 6
Hernia 2 0 2
Herpes (HSV) 4 0 4
Hidradenitis Suppurativa (HS) 20 0 20
High Blood Pressure (Hypertension, HBP), BBBBB,95 14 109
High Cholesterol (Hyperlipidemia) 47 3 50
Hip Dysplasia 3 1 4
Hip Replacement 9 0 9
Hirschsprung's Disease (HD, HSCR), BBBBB,1 5 6
HIV 4 0 4
Hodgkins Lymphoma 3 0 3
Human Growth Hormone Deficiency (GHD) 8 4 12
Human Papillomavirus (Human Papillomavirus (HPV) 3 0 3
Huntington's Disease (HD) 3 3 6
Hydrocephalus 7 4 11
Hyperhidrosis 3 0 3
Hypermobility Syndrome 15 2 17
Hyperparathyroidism 4 0 4
Hypersomnia 5 1 6
Hyperthyroidism 8 2 10
Hypocalcemia 1 0 1
Hypoglycemia (Low Blood Sugar) 17 1 18
Hypokalemia 1 0 1
Hypoparathyroidism 4 0 4
Hypophosphatasia (HPP) 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 95 1 96
Hypotonia 0 6 6
Hysterectomy 1 0 1
Immune Thrombocytopenic Purpura (ITP) 5 1 6
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 8 3 11
Infertility 5 0 5
Insomnia 24 1 25
Intellectual Disability 0 6 6
Interstitial Cystitis (IC) 11 0 11
Interstitial Lung Disease (ILD) 5 0 5
Intracranial Hemorrhage (Brain Bleeds) 1 0 1
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,2 1 3
Iritis 2 0 2
Irritable Bowel Syndrome (IBS) 100 2 102
Juvenile Arthritis (JA) 8 10 18
Kawasaki Disease 1 0 1
Keratosis Pilaris (follicular keratosis) 1 0 1
Kidney Disease 42 7 49
Klippel-Feil Syndrome (KFS) 2 0 2
Knee Replacement 3 1 4
Lactose Intolerance 8 0 8
Learning Disability 6 6 12
Legg-Calve-Perthes Disease (LCPD) 1 1 2
LEOPARD Syndrome 1 1 2
Leukemia 9 2 11
Leukodystrophy 2 2 4
Lichen Planus 1 0 1
Lichen Sclerosis (LS) 4 0 4
Lipedema 2 0 2
Liposarcoma 2 0 2
Liver Cancer 4 0 4
Liver Disease (not hepatitis) 35 2 37
Loss of Mobility 3 3 6
Low Blood Pressure (Hypotension) 9 0 9
Low Testosterone 1 0 1
Lung Cancer 7 3 10
Lung Disease 7 1 8
Lupus 123 2 125
Lyme Disease 7 0 7
Lymphedema 7 0 7
Lymphoma 3 0 3
Macular Degeneration 2 1 3
Mal de debarquement Syndrome (MdDS) 1 0 1
Marfan Syndrome (MFS) 3 1 4
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,20 1 21
McCune-Albright Syndrome (MAS) 0 1 1
Median arcuate ligament syndrome (MALS) 1 0 1
Memory Loss 4 1 5
Meniere's Disease (MD) 4 0 4
Menopause 4 0 4
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,2 0 2
Mental Illness 9 3 12
Metabolic Syndrome 1 0 1
Methicillin-Resistant Staphylococcus Aureus (MRSA) 1 0 1
Microscopic Colitis 1 0 1
Microtia 1 1 2
Migraine 102 2 104
Mitochondrial Disease 5 0 5
Mixed Connective Tissue Disease (MCTD) 13 0 13
Monoclonal gammopathy of undetermined significance (MGUS) 1 0 1
Mood Disorder 7 0 7
Moyamoya Disease 2 0 2
MTHFR 1 0 1
Mucopolysaccharidoses (MPS) 1 0 1
Multiple Endocrine Neoplasia (MEN) 4 0 4
Multiple Myeloma (MM) 2 0 2
Multiple Sclerosis (MS) 188 7 195
Multiple System Atrophy (MSA) 1 0 1
Muscle Spasms 2 0 2
Muscle Tension Dysphonia (MTD) 1 0 1
Muscular Dystrophy (MD) 13 6 19
Myasthenia Gravis (MG) 11 0 11
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 3 0 3
Myelodysplastic syndrome (MDS) 4 0 4
Myopathy 0 1 1
Myositis 3 0 3
Narcolepsy 10 1 11
Neuralgia 11 0 11
Neuroendocrine Cancer (NET) 6 1 7
Neurofibromatosis (NF) 5 1 6
Neurogenic Bladder 5 1 6
Neurogenic Bowel 1 0 1
Neuromyelitis optica (NMO) 22 0 22
Neuropathy 29 1 30
Neutropenia 1 2 3
Niemann-Pick Disease 1 0 1
Non-Hodgkin's Lymphoma (NHL) 7 1 8
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 1 0 1
Noonan Syndrome (NS) 0 1 1
Obesity 29 0 29
Obsessive Compulsive Disorder (OCD) 41 2 43
Oppositional Defiant Disorder (ODD) 4 2 6
Organ Transplant 19 1 20
Osteoarthritis (OA) 114 5 119
Osteogenesis Imperfecta (OI) 3 2 5
Osteomyelitis (OM) 1 0 1
Osteopenia 8 1 9
Osteoporosis 23 2 25
Ostomy 1 1 2
Other, please specify, BBBBB,59 18 77
Ovarian Cancer 3 0 3
Ovarian Cyst 3 0 3
Overactive Bladder (OAB) 7 0 7
Paget's 1 0 1
Pancreatic Cancer 1 1 2
Pancreatitis 2 1 3
Paralysis 4 0 4
Paraneoplastic Syndrome 1 0 1
Parkinson's Disease (PD) 18 8 26
Paroxysmal Nocturnal Hemoglobinuria (PNH) 4 0 4
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 7 0 7
Pemphigus / Pemphigoid 9 1 10
Periventricular Leukomalacia (PVL) 0 1 1
Personality Disorder 3 0 3
Phenylketonuria (PKU) 2 0 2
Pheochromocytoma (PCC) 1 0 1
Pituitary Tumor 9 0 9
Plantar Fasciitis (PF) 6 0 6
Pneumonia 2 0 2
Polio 1 0 1
Polychrondritis 6 0 6
Polycystic Ovarian Syndrome (PCOS) 57 0 57
Polycythemia Vera (PV) 8 0 8
Polymicrogyria (PMG) 0 2 2
Polymyositis (PM) 4 0 4
Pompe Disease 0 2 2
Porphyria 2 0 2
Post-Polio Syndrome (PPS) 1 0 1
Posttraumatic Stress Disorder (PTSD) 114 2 116
Precocious Puberty 0 1 1
Premenstrual Dysphoric Disorder (PMDD) 7 0 7
Primary Immunodeficiency (PID) 8 1 9
Prolactinoma 2 0 2
Prostate Cancer 6 3 9
Protein Deficiency 2 0 2
Psoriasis 56 1 57
Psoriatic Arthritis (PsA) 23 1 24
Ptosis (Drooping eye, Blepharoptosis), BBBBB,0 1 1
Pulmonary Arterial Hypertension (PAH) 16 3 19
Pulmonary Embolism (PE) 3 0 3
Pulmonary Fibrosis (PF) 4 0 4
Pyoderma Gangrenosum (PG) 2 0 2
Raynaud's Syndrome 47 1 48
Rectal Cancer (CRC) 1 0 1
Rectocele 1 0 1
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,3 0 3
Restless Leg Syndrome (RLS) 10 1 11
Rheumatoid Arthritis (RA) 94 8 102
Rosacea 10 0 10
Sacroiliac Joint Disease (SI) 3 0 3
Sarcoidosis 6 0 6
Sarcoma 1 0 1
Scheuermann's Kyphosis 1 1 2
Schizophrenia 6 5 11
Sciatica 12 1 13
Scleroderma 18 2 20
Scoliosis 34 6 40
Secondary Adrenal insufficiency 3 0 3
Sensory Processing Disorder (SPD) 8 2 10
Sepsis 0 1 1
Shingles (Herpes Zoster) 3 0 3
Short Bowel Syndrome (SBS, Short Gut), BBBBB,4 2 6
Sickle Cell Disease (SCD) 10 7 17
Sickle Cell Disease (SCD): Sickle Cell Trait 1 0 1
Sinusitis 9 1 10
Sjogren's Syndrome (SjS, SS), BBBBB,23 0 23
Skin Cancer 1 0 1
Skin Cancer- Melanoma 9 0 9
Sleep Apnea (OSA) 33 3 36
Sleep Disorder 8 0 8
Small Intestinal Bacterial Overgrowth (SIBO) 2 0 2
Sotos Syndrome 0 1 1
Spastic Diplegia 0 1 1
Spasticity 1 0 1
Speech Impairment 1 1 2
Spherocytosis 1 0 1
Spina Bifida (SB) 2 3 5
Spinal Cord 24 3 27
Spinal Muscular Atrophy (SMA) 15 34 49
Squamous Cell Carcinoma (SCC) 3 0 3
Stiff Person Syndrome (SPS) 2 0 2
Stomach Ulcer 4 0 4
Stroke 8 3 11
Subglottic Stenosis (SGS) 1 0 1
Syncope 5 0 5
Syringomyelia 4 0 4
Tardive Dyskinesia (TD) 1 0 1
Tarlov Cysts 3 0 3
Temporomandibular joint (TMJ) 19 0 19
Tendonitis 8 0 8
Thalassemia 6 1 7
Thoracic Outlet Syndrome (TOS) 7 0 7
Thrombocytopenia (TCP) 3 0 3
Thyroid Cancer 9 0 9
Thyroid Eye Disease (TED) 2 0 2
Thyroid Nodule 8 0 8
Thyroidectomy 2 0 2
Torticollis (Wry Neck) 0 1 1
Tourette Syndrome (TS) 8 1 9
Tracheobronchomalacia (TBM) 1 0 1
Tracheomalacia 0 1 1
Transient Global Amnesia (TGA) 1 0 1
Traumatic Brain Injury (TBI) 8 1 9
Trichotillomania (TTM) 3 0 3
Trisomy 18 (Edwards Syndrome) 0 1 1
Tuberculosis 1 0 1
Ulcerative Colitis (UC) 63 8 71
Undifferentiated Connective Tissue Disease (UCTD) 3 0 3
Urea Cycle Disorder (UCD) 2 0 2
Urinary Tract Infection (UTI) 4 1 5
Urticaria (Hives) 17 1 18
Uterine Fibroids 10 0 10
Uterine Polyps 1 0 1
Uveitis 5 0 5
Vaginismus 1 0 1
Varicose Veins 4 0 4
Vasculitis 2 0 2
Vertigo 4 1 5
Vision Impairment 21 14 35
Vitamin B12 Deficiency 5 0 5
Vitamin D Deficiency 3 0 3
Vitiligo 4 0 4
Vocal Cord Dysfunction (VCD) 1 1 2
Von Willebrand Disease (VWD) 8 1 9
Vulvodynia 3 0 3
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,12 1 13
Wegener's Granulomatosis with Polyangiitis (GPA) 3 0 3
Wheelchair 84 40 124
Wilson's Disease (hepatolenticular degeneration) 1 0 1
Wolff-Parkinson-White (WPW) Syndrome 1 0 1
UK
Disease/Condition Patients Caregivers Total
Achalasia 4 0 4
Acne 13 4 17
Acoustic Neuroma (Vestibula Schwannoma) 3 0 3
Addiction 18 16 34
Addison's Disease (Adrenal insufficiency) 32 5 37
Adenomyosis 19 0 19
Adhesive Capsulitis (Frozen Shoulder) 5 2 7
Aicardi Syndrome 0 1 1
Albinism 0 1 1
Allergies 147 19 166
Alopecia 13 1 14
Alpha 1 Antitrypsin Deficiency (A1AD) 5 2 7
Alternating Hemiplegia of Childhood (AHC) 1 0 1
Alzheimer's Disease (AD) 7 146 153
Amplified Musculoskeletal Pain Syndrome 6 1 7
Amputation 16 10 26
Amyloidosis 5 3 8
Amyotrophic Lateral Sclerosis (ALS) 1 2 3
Anal Cancer 4 0 4
Anemia 100 8 108
Aneurysm 5 3 8
Ankylosing Spondylitis (AS) 72 9 81
Anosmia (loss of smell) 2 0 2
Anoxic Brain Injury 1 0 1
Antiphospholipid Syndrome (APS) 14 4 18
Antisynthetase Syndrome 1 0 1
Anxiety 791 128 919
Aortic Disease 20 9 29
Aphasia 1 7 8
Aplastic Anemia (AA) 0 2 2
Apraxia 1 1 2
Arachnoid Cyst 4 0 4
Arachnoiditis 2 0 2
Arteriovenous Malformation (AVM) 2 1 3
Arthrogryposis Multiplex Congenita (AMC) 6 3 9
Aspirin-like defect (ALD) 1 0 1
Asthma 704 83 787
Ataxia 11 6 17
Atrial Fibrillation (AFIB) 47 14 61
Atrophic Vaginitis 2 0 2
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,103 85 188
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 4 6 10
Autism 152 240 392
Autoimmune Disease 34 4 38
Autoimmune Encephalitis (AE) 1 0 1
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,11 1 12
Barrett's Esophagus 24 4 28
Basal Cell Carcinoma (BCC) 2 1 3
Beckwith-Wiedemann Syndrome (BWS) 0 1 1
Behcet's Disease (BD) 7 0 7
Bell's Palsy 2 0 2
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,10 4 14
Beta Thalassemia (Cooley s Anemia) 3 0 3
Bile Acid Malabsorption (BAD) 16 2 18
Bile Duct Cancer (Cholangiocarcinoma) 1 1 2
Bipolar 106 30 136
Bladder Cancer 11 1 12
Blood Cancer 6 5 11
Blood Clot 22 5 27
Blood Clotting Disorder 8 0 8
Bone Cancer 5 5 10
Borderline Personality Disorder (BPD) 144 25 169
Brain Aneurysm 10 3 13
Brain Cancer 2 5 7
Brain Damage 4 10 14
Brain Tumor 20 7 27
BRCA Mutation 3 0 3
Breast Cancer (BC) 76 16 92
Bronchiectasis 28 1 29
Bronchitis 5 2 7
Bronchopulmonary Dysplasia (BPD) 0 1 1
Bulging Disc 32 1 33
Bursitis 22 1 23
Cancer 162 54 216
Candidiasis (Yeast Infection) 2 0 2
Carcinoid Cancer 0 2 2
Carcinoma 4 1 5
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Caroli Disease 1 0 1
Carpal Tunnel Syndrome (CTS) 42 5 47
Cauda Equina Syndrome 6 1 7
Celiac Disease (CCD) 39 2 41
Cellulitis 9 2 11
Central Pain Syndrome (CPS) 1 0 1
Cerebral Palsy (CP) 19 41 60
Cervical Cancer 7 2 9
Cervical Dystonia 1 0 1
Chiari Malformation (CM) 19 4 23
Chronic Fatigue Syndrome (CFS, ME), BBBBB,265 15 280
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 9 3 12
Chronic Intestinal Pseudo-obstruction (CIPO) 5 2 7
Chronic obstructive pulmonary disease (COPD) 298 102 400
Chronic Pain 299 31 330
Chronic Venous Insufficiency (CVI) 0 1 1
Clostridium difficile (C Diff) 1 0 1
Cluster Headache 23 3 26
Cognitive Impairment (CI) 1 2 3
Colon Cancer (CRC) 12 10 22
Colon Polyps 1 0 1
Colonic Inertia 1 0 1
Color Blind 1 0 1
Colorectal Cancer (CRC) 4 3 7
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,34 2 36
Congenital Adrenal Hyperplasia (CAH) 2 1 3
Congenital Central Hypoventilation Syndrome (CCHS) 1 0 1
Congenital Myopathy 2 0 2
Constipation 21 8 29
Conversion Disorder (CD) 2 1 3
Coronavirus (COVID-19) 49 6 55
Cortical Dysplasia 0 1 1
Costochondritis 27 3 30
Cowden Syndrome (CS) 6 0 6
Craniocervical Instability (CCI) 2 0 2
Craniosynostosis 0 2 2
Crohn's Disease (CD) 160 9 169
Cushing's Disease (CS) 13 1 14
Cyclic Vomiting Syndrome (CVS) 10 4 14
Cystic Fibrosis (CF) 3 8 11
Cystinosis 0 1 1
Dandy Walker Syndrome (DWS) 1 1 2
Darier Disease (DD Keratosis Follicularis) 1 0 1
Deep Vein Thrombosis (DVT) 10 3 13
Degenerative Disc Disease (DDD) 107 7 114
Deletion Duplication Syndrome 1 3 4
Delta-Storage Pool Deficiency 1 0 1
Depression (MDD) 949 119 1068
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 5 1 6
Developmental Delay (DD) 4 31 35
Diabetes (DM) 735 206 941
Disabled 10 5 15
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,8 5 13
Diverticulitis 87 13 100
Down Syndrome (DS) 0 11 11
Dupuytren's Contracture 8 0 8
Dwarfism 3 1 4
Dysautonomia 103 4 107
Dyskeratosis Congenita 2 0 2
Dyslexia 23 7 30
Dysmenorrhea (Painful Menstruation) 12 0 12
Dysphagia (Difficulty Swallowing) 8 5 13
Dystonia 10 2 12
Eating Disorder 46 11 57
Eczema (Atopic Dermatitis) 99 10 109
Edema 1 1 2
Ehlers-Danlos Syndrome (EDS) 183 17 200
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 3 0 3
Encephalitis 2 1 3
Endometrial Cancer 7 2 9
Endometriosis 101 4 105
Enlarged Spleen (Splenomegaly) 4 0 4
Eosinophilic Colitis (EC) 1 0 1
Eosinophilic Esophagitis (EOE) 6 0 6
Eosinophilic Gasteroenteritis (EG) 0 1 1
Epicondylitis (Tennis Elbow) 3 0 3
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 135 132 267
Erectile Dysfunction (ED) 12 0 12
Erythema Nodosum 1 0 1
Erythromelalgia 9 0 9
Esophageal Cancer 2 1 3
Esophageal Varices 0 1 1
Essential Thrombocythemia 5 2 7
Essential Tremor 11 2 13
Exocrine Pancreatic Insufficiency (EPI) 7 2 9
Eye Cancer 0 2 2
Fabry disease 1 0 1
Failure to Thrive (FTT) 1 0 1
Familial Hypercholesterolemia (FH) 11 1 12
Familial Mediterranean Fever (FMF) 2 0 2
Fatty Oxidation Disorder (FAOD) 1 2 3
Fetal Alcohol Syndrome (FAS) 0 5 5
Fibrocystic Breasts 3 1 4
Fibromuscular Dysplasia (FMD) 4 0 4
Fibromyalgia (FM) 804 50 854
Fibrous Dysplasia 5 0 5
Fistula 6 4 10
Foot Drop 4 1 5
Fragile X Syndrome (FXS) 0 2 2
Functional Neurological Disorder (FND) 57 6 63
Gall Stones 26 3 29
Ganglioneuroblastoma 0 1 1
Gastric Bypass 4 1 5
Gastric Dysmotility 14 1 15
Gastritis 16 4 20
Gastroesophageal Reflux Disease (GERD) 138 23 161
Gastrointestinal Stromal Tumor (GIST) 1 1 2
Gastroparesis (GP) 42 5 47
Gastroschisis 2 0 2
Gastrostomy Tube (G-tube) 3 1 4
Gaucher Disease (GD) 2 1 3
Gender Dysphoria 6 0 6
Giant Cell Arteritis (GCA) 4 0 4
Gluten Intolerance 8 0 8
Glycogen Storage Disease (GSD) 0 1 1
Goiter 3 1 4
Goldenhar Syndrome 2 0 2
Gout 23 6 29
Graft Versus Host Disease (GVHD) 1 1 2
Granular Cell Tumors 1 0 1
Granuloma Annulare (GA) 1 0 1
Grave's Disease (GD) 25 2 27
Guillain-Barre Syndrome (GBS) 5 1 6
Hashimoto's Disease (HT) 47 3 50
Head and Neck Cancer 7 2 9
Headache 41 5 46
Hearing Aid 40 9 49
Hearing Loss 120 37 157
Heart Disease 309 151 460
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 15 1 16
Hemophilia 10 2 12
Hemorrhoids 5 0 5
Hepatitis 16 3 19
Hereditary alpha-tryptasemia (H?T) 1 0 1
Hereditary Angioedema (HAE) 7 0 7
Hereditary hemorrhagic telangiectasia (HHT) 1 1 2
Hereditary Spastic Paraparesis (HSP) 4 0 4
Hereditary Spastic Paraplegia (HSP) 1 1 2
Hernia 98 15 113
Herpes (HSV) 8 0 8
Hidradenitis Suppurativa (HS) 37 5 42
High Blood Pressure (Hypertension, HBP), BBBBB,468 90 558
High Cholesterol (Hyperlipidemia) 188 35 223
Hip Dysplasia 16 4 20
Hip Replacement 26 4 30
Hirschsprung's Disease (HD, HSCR), BBBBB,2 2 4
Hirsutism 3 0 3
HIV 20 3 23
Hodgkins Lymphoma 11 1 12
Horner Syndrome 1 0 1
Human Growth Hormone Deficiency (GHD) 12 5 17
Human Papillomavirus (Human Papillomavirus (HPV) 3 0 3
Huntington's Disease (HD) 5 5 10
Hydrocephalus 6 8 14
Hyperaldosteronism 1 0 1
Hyperemesis Gravidarum (HG, Morning Sickness), BBBBB,1 0 1
Hyperhidrosis 11 0 11
Hyperkalemia 1 1 2
Hypermobility Syndrome 114 24 138
Hyperparathyroidism 18 3 21
Hypersomnia 4 0 4
Hyperthyroidism 33 4 37
Hypocalcemia 2 0 2
Hypoglycemia (Low Blood Sugar) 16 0 16
Hypokalemia 0 1 1
Hypokalemic Periodic Paralysis 0 1 1
Hypoparathyroidism 9 2 11
Hypophosphatasia (HPP) 1 0 1
Hypothyroidism 331 16 347
Hypotonia 0 3 3
Hypoxic Ischemic Encephalopathy (HIE) 0 3 3
Hysterectomy 7 0 7
Immune Thrombocytopenic Purpura (ITP) 10 0 10
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 45 13 58
Infertility 5 0 5
Insomnia 65 6 71
Intellectual Disability 1 5 6
Intermittent Explosive Disorder (IED) 1 0 1
Interstitial Cystitis (IC) 17 0 17
Interstitial Lung Disease (ILD) 4 1 5
Intracranial Hemorrhage (Brain Bleeds) 2 4 6
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,24 2 26
intracranial Pressure (ICP) 2 0 2
Iritis 2 1 3
Irritable Bowel Syndrome (IBS) 344 38 382
Juvenile Arthritis (JA) 4 0 4
Keratosis Pilaris (follicular keratosis) 3 0 3
Kidney Disease 116 44 160
Klinefelter Syndrome (XXY Syndrome) 2 1 3
Klippel-Feil Syndrome (KFS) 3 0 3
Knee Replacement 22 2 24
Lactose Intolerance 12 1 13
Langerhans Cell Histiocytosis (LCH) 1 0 1
Laryngeal Cancer 0 2 2
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 0 1 1
Learning Disability 14 62 76
Leiomyosarcoma 2 0 2
Leukemia 22 7 29
Leukodystrophy 1 1 2
Lichen Planus 8 0 8
Lichen Sclerosis (LS) 13 0 13
Lipedema 8 1 9
Lipodystrophy 1 0 1
Liposarcoma 1 0 1
Liver Cancer 2 6 8
Liver Disease (not hepatitis) 85 25 110
Loeys Dietz Syndrome 2 0 2
Loin Pain Hematuria Syndrome (LPHS) 1 0 1
Loss of Mobility 32 24 56
Low Blood Pressure (Hypotension) 44 7 51
Low Testosterone 2 3 5
Lung Cancer 22 18 40
Lung Disease 51 14 65
Lupus 116 8 124
Lyme Disease 10 0 10
Lymphedema 39 8 47
Lymphocytic Colitis 1 0 1
Lymphoma 3 3 6
Lymphoproliferative Disease (LPD) 0 1 1
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 1 0 1
Macular Degeneration 12 12 24
Mal de debarquement Syndrome (MdDS) 3 0 3
Malabsorption 3 0 3
Marfan Syndrome (MFS) 0 1 1
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,28 1 29
May Thurner Syndrome 1 0 1
Memory Loss 6 17 23
Meniere's Disease (MD) 24 1 25
Menopause 34 0 34
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,8 0 8
Mental Illness 96 52 148
Metabolic Syndrome 3 1 4
Methicillin-Resistant Staphylococcus Aureus (MRSA) 1 0 1
Microcephaly 1 7 8
Microscopic Colitis 4 0 4
Microtia 2 0 2
Migraine 336 18 354
Mitochondrial Disease 1 3 4
Mixed Connective Tissue Disease (MCTD) 14 0 14
Monoclonal gammopathy of undetermined significance (MGUS) 10 0 10
Mood Disorder 12 2 14
Morgellons Disease (MD) 1 0 1
Moyamoya Disease 2 1 3
MTHFR 1 0 1
Mucopolysaccharidoses (MPS) 0 1 1
Multiple Myeloma (MM) 8 7 15
Multiple Sclerosis (MS) 157 23 180
Multiple System Atrophy (MSA) 0 4 4
Muscle Spasms 6 1 7
Muscular Dystrophy (MD) 24 11 35
Myasthenia Gravis (MG) 14 2 16
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 2 1 3
Myelodysplastic syndrome (MDS) 1 0 1
Myelofibrosis 2 2 4
Myeloproliferative Neoplasms 1 0 1
Myopathy 2 0 2
Myositis 1 0 1
Narcolepsy 18 2 20
Nasal Polyps 2 0 2
Neck Cancer 1 1 2
Neck Surgery 1 0 1
Neuralgia 37 1 38
Neuroendocrine Cancer (NET) 6 1 7
Neurofibromatosis (NF) 14 2 16
Neurogenic Bladder 9 2 11
Neurogenic Bowel 1 2 3
Neuromyelitis optica (NMO) 3 2 5
Neuropathy 130 14 144
Neutropenia 3 1 4
Non-Hodgkin's Lymphoma (NHL) 15 7 22
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 6 1 7
Noonan Syndrome (NS) 0 1 1
Obesity 57 14 71
Obsessive Compulsive Disorder (OCD) 74 13 87
Oppositional Defiant Disorder (ODD) 0 11 11
Organ Transplant 30 3 33
Osteoarthritis (OA) 756 101 857
Osteogenesis Imperfecta (OI) 1 0 1
Osteomyelitis (OM) 4 2 6
Osteopenia 38 1 39
Osteoporosis 116 21 137
Other, please specify, BBBBB,318 95 413
Ovarian Cancer 10 6 16
Ovarian Cyst 12 1 13
Overactive Bladder (OAB) 35 1 36
Pancreatic Cancer 4 5 9
Pancreatitis 19 6 25
Paralysis 13 7 20
Parkinson's Disease (PD) 19 40 59
Paroxysmal Nocturnal Hemoglobinuria (PNH) 2 0 2
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 5 0 5
Pelvic Inflammatory Disease (PID) 1 0 1
Pemphigus / Pemphigoid 3 1 4
Periodic Limb Movement Disorder (PLMD) 4 0 4
Periodontitis (Gum Disease) 6 0 6
Periventricular Leukomalacia (PVL) 0 1 1
Personality Disorder 13 4 17
Pituitary Tumor 9 0 9
Plantar Fasciitis (PF) 33 1 34
Pneumonia 8 0 8
Poland Syndrome 1 1 2
Polio 2 1 3
Polycystic Ovarian Syndrome (PCOS) 110 3 113
Polycythemia Vera (PV) 2 0 2
Polymyalgia Rheumatica (PMR) 22 3 25
Porphyria 1 0 1
Post-Polio Syndrome (PPS) 5 2 7
Posttraumatic Stress Disorder (PTSD) 241 32 273
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 2 1 3
Premenstrual Dysphoric Disorder (PMDD) 9 0 9
Primary Immunodeficiency (PID) 4 1 5
Progressive Multifocal Leukoencephalopathy (PML) 0 1 1
Progressive Supranuclear Palsy (PSP) 0 2 2
Prolactinoma 2 0 2
Prostate Cancer 13 9 22
Protein Deficiency 1 0 1
Proteinuria (Protein in Urine) 2 0 2
Prurigo Nodularis (PN) 7 0 7
Psoriasis 121 14 135
Psoriatic Arthritis (PsA) 36 4 40
Ptosis (Drooping eye, Blepharoptosis), BBBBB,0 1 1
Pulmonary Arterial Hypertension (PAH) 9 5 14
Pulmonary Embolism (PE) 16 2 18
Pulmonary Fibrosis (PF) 14 3 17
Pyoderma Gangrenosum (PG) 1 1 2
Raynaud's Syndrome 99 8 107
Rectal Cancer (CRC) 1 1 2
Rectocele 4 0 4
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,7 2 9
Restless Leg Syndrome (RLS) 44 5 49
Rheumatoid Arthritis (RA) 305 67 372
Rickets (Osteomalacia) 2 0 2
Rosacea 7 0 7
Sacroiliac Joint Disease (SI) 3 3 6
Sarcoidosis 24 3 27
Sarcoma 6 0 6
Scheuermann's Kyphosis 12 3 15
Schizophrenia 27 32 59
Sciatica 77 3 80
Scleroderma 11 4 15
Scoliosis 61 11 72
Secondary Adrenal insufficiency 7 0 7
Sensory Processing Disorder (SPD) 8 27 35
Sepsis 9 1 10
Shingles (Herpes Zoster) 5 0 5
Short Bowel Syndrome (SBS, Short Gut), BBBBB,7 0 7
Sickle Cell Disease (SCD) 7 5 12
Sickle Cell Disease (SCD): Sickle Cell Trait 3 0 3
Sinusitis 23 3 26
Sjogren's Syndrome (SjS, SS), BBBBB,44 2 46
Skin Cancer 5 1 6
Skin Cancer- Melanoma 12 4 16
Sleep Apnea (OSA) 94 23 117
Sleep Disorder 40 7 47
Small Intestinal Bacterial Overgrowth (SIBO) 5 1 6
Spasticity 1 1 2
Speech Impairment 1 11 12
Spherocytosis 4 0 4
Sphincter of Oddi Dysfunction 7 0 7
Spina Bifida (SB) 15 5 20
Spinal Cancer 0 1 1
Spinal Cord 155 24 179
Spinal Muscular Atrophy (SMA) 11 4 15
Sprengel Deformity 1 0 1
Squamous Cell Carcinoma (SCC) 2 2 4
Stickler Syndrome 1 0 1
Stiff Person Syndrome (SPS) 2 0 2
Stomach Cancer 3 3 6
Stomach Ulcer 9 1 10
Stroke 89 82 171
Subcortical Band Heterotopia 0 1 1
Subglottic Stenosis (SGS) 1 0 1
Syncope 8 0 8
Synesthesia 1 0 1
Syringomyelia 8 0 8
Tardive Dyskinesia (TD) 1 0 1
Tarlov Cysts 4 0 4
Temporomandibular joint (TMJ) 36 1 37
Tendonitis 13 1 14
Testicular Cancer 5 2 7
Thalassemia 3 0 3
Thoracic Outlet Syndrome (TOS) 5 1 6
Throat Cancer 0 2 2
Thrombocytopenia (TCP) 6 1 7
Thrombotic Thrombocytopenic Purpura (TTP) 2 0 2
Thyroid Cancer 13 2 15
Thyroid Eye Disease (TED) 7 0 7
Thyroid Nodule 4 0 4
Tics 1 2 3
Torticollis (Wry Neck) 2 0 2
Tourette Syndrome (TS) 5 3 8
Tracheobronchomalacia (TBM) 1 0 1
Tracheomalacia 1 1 2
Traumatic Brain Injury (TBI) 10 6 16
Treacher Collins syndrome (TCS) 1 0 1
Trichotillomania (TTM) 4 0 4
Trigger Finger (Stenosing Tenosynovitis) 3 0 3
Trisomy X (XXX) 1 0 1
Tuberculosis 3 0 3
Ulcerative Colitis (UC) 114 5 119
Undifferentiated Connective Tissue Disease (UCTD) 16 0 16
Urinary Tract Infection (UTI) 8 2 10
Urticaria (Hives) 23 4 27
Uterine Cancer 3 0 3
Uterine Fibroids 25 0 25
Uterine Leiomyosarcoma 1 0 1
Uterine Polyps 3 0 3
Uveitis 9 2 11
Vaginismus 2 0 2
Varicose Veins 8 3 11
Vasculitis 19 5 24
Vertigo 30 5 35
Vision Impairment 124 36 160
Vitamin B12 Deficiency 45 4 49
Vitamin D Deficiency 34 1 35
Vitiligo 9 0 9
Vocal Cord Dysfunction (VCD) 4 0 4
Von Willebrand Disease (VWD) 6 1 7
Vulvar Cancer 2 1 3
Vulvodynia 2 0 2
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,0 1 1
Wegener's Granulomatosis with Polyangiitis (GPA) 2 0 2
Wheelchair 181 94 275
Williams Syndrome (WS) 0 1 1
Wolff-Parkinson-White (WPW) Syndrome 1 0 1
X-Linked Hypophosphatemia (XLH) 2 0 2
Germany
Disease/Condition Patients Caregivers Total
Achalasia 1 0 1
Acne 2 1 3
Acoustic Neuroma (Vestibula Schwannoma) 2 0 2
Adams-Oliver Syndrome (AOS) 1 0 1
Addiction 6 2 8
Addison's Disease (Adrenal insufficiency) 2 0 2
Adhesive Capsulitis (Frozen Shoulder) 2 0 2
Agenesis of the Corpus Callosum (ACC) 1 0 1
Aicardi Syndrome 1 0 1
Allergies 35 0 35
Alopecia 5 0 5
Alzheimer's Disease (AD) 1 38 39
Amplified Musculoskeletal Pain Syndrome 1 0 1
Amputation 2 0 2
Amyloidosis 0 1 1
Amyotrophic Lateral Sclerosis (ALS) 0 1 1
Anal Cancer 2 0 2
Anemia 9 1 10
Aneurysm 1 2 3
Ankylosing Spondylitis (AS) 3 0 3
Anosmia (loss of smell) 1 0 1
Anoxic Brain Injury 1 1 2
Antisynthetase Syndrome 1 0 1
Anxiety 40 2 42
Aortic Disease 3 3 6
Aphasia 1 0 1
Arachnoid Cyst 1 1 2
Arachnoiditis 1 0 1
Arteriovenous Malformation (AVM) 1 0 1
Asthma 64 5 69
Ataxia 1 0 1
Atrial Fibrillation (AFIB) 4 1 5
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,12 3 15
Autism 7 4 11
Autoimmune Disease 5 0 5
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,1 0 1
Beckwith-Wiedemann Syndrome (BWS) 1 0 1
Behcet's Disease (BD) 2 0 2
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,4 1 5
Bile Acid Malabsorption (BAD) 1 0 1
Bipolar 15 0 15
Bladder Cancer 3 1 4
Blood Cancer 2 0 2
Blood Clotting Disorder 1 1 2
Bone Cancer 1 0 1
Borderline Personality Disorder (BPD) 26 0 26
Brain Aneurysm 1 2 3
Brain Damage 1 0 1
Brain Tumor 2 2 4
BRCA Mutation 3 0 3
Breast Cancer (BC) 8 3 11
Bronchitis 3 2 5
Bulging Disc 9 2 11
Bursitis 1 0 1
Cancer 43 6 49
Carcinoma 1 0 1
Cardiofaciocutaneous Syndrome (CFC syndrome) 1 0 1
Carpal Tunnel Syndrome (CTS) 2 0 2
Castleman Disease (CD) 2 1 3
Celiac Disease (CCD) 2 0 2
Cellulitis 1 0 1
Central Pain Syndrome (CPS) 1 0 1
Cerebral Palsy (CP) 0 1 1
Cervical Cancer 2 0 2
Charge Syndrome 1 0 1
Chronic Fatigue Syndrome (CFS, ME), BBBBB,10 1 11
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 10 4 14
Chronic Intestinal Pseudo-obstruction (CIPO) 2 0 2
Chronic obstructive pulmonary disease (COPD) 62 10 72
Chronic Pain 62 6 68
Chronic Venous Insufficiency (CVI) 2 0 2
Clostridium difficile (C Diff) 1 0 1
Clubfoot 1 1 2
Cluster Headache 3 0 3
Cognitive Impairment (CI) 0 1 1
Colon Cancer (CRC) 5 1 6
Colorectal Cancer (CRC) 0 1 1
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,3 0 3
Congenital Sucrase-Isomaltase Deficiency (CSID) 1 0 1
Constipation 3 1 4
Coronavirus (COVID-19) 3 1 4
Craniocervical Instability (CCI) 1 0 1
Craniosynostosis 1 0 1
Crohn's Disease (CD) 15 0 15
Cushing's Disease (CS) 1 0 1
Deep Vein Thrombosis (DVT) 7 0 7
Degenerative Disc Disease (DDD) 11 2 13
Depression (MDD) 131 16 147
Developmental Delay (DD) 0 2 2
Diabetes (DM) 119 43 162
Disabled 1 1 2
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,6 1 7
Diverticulitis 1 0 1
Down Syndrome (DS) 1 0 1
Dysautonomia 4 0 4
Dyslexia 1 0 1
Dystonia 2 0 2
Eating Disorder 10 0 10
Eczema (Atopic Dermatitis) 9 1 10
Edema 2 1 3
Ehlers-Danlos Syndrome (EDS) 6 0 6
Encephalitis 2 1 3
Encephalocele 1 0 1
Endometrial Cancer 1 1 2
Endometriosis 6 0 6
Enlarged Spleen (Splenomegaly) 1 0 1
Enteric Hyperoxaluria 1 0 1
Eosinophilic Colitis (EC) 2 0 2
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 22 16 38
Erb's Palsy 1 0 1
Essential Thrombocythemia 1 0 1
Essential Tremor 0 1 1
Exocrine Pancreatic Insufficiency (EPI) 3 0 3
Eye Cancer 1 0 1
Failure to Thrive (FTT) 0 1 1
Familial Hypercholesterolemia (FH) 1 0 1
Fetal Alcohol Syndrome (FAS) 1 0 1
Fibrodysplasia Ossificans Progressiva (FOP) 1 0 1
Fibromyalgia (FM) 40 1 41
Functional Neurological Disorder (FND) 1 0 1
Galactosemia 1 0 1
Gall Stones 5 1 6
Ganglioneuroblastoma 1 0 1
Gastric Bypass 4 0 4
Gastric Dysmotility 1 0 1
Gastritis 12 1 13
Gastroesophageal Reflux Disease (GERD) 8 0 8
Gastroparesis (GP) 5 0 5
Gastroschisis 1 0 1
Gender Dysphoria 1 0 1
Gout 12 0 12
Grave's Disease (GD) 4 0 4
Guillain-Barre Syndrome (GBS) 2 0 2
Hashimoto's Disease (HT) 18 1 19
Head and Neck Cancer 1 0 1
Headache 18 1 19
Hearing Aid 2 0 2
Hearing Loss 14 1 15
Heart Disease 58 29 87
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 3 0 3
Hemorrhoids 5 0 5
Hepatitis 5 0 5
Hereditary Angioedema (HAE) 0 1 1
Hereditary Spastic Paraparesis (HSP) 3 1 4
Hereditary Spastic Paraplegia (HSP) 2 0 2
Hernia 2 1 3
Herpes (HSV) 1 0 1
Hidradenitis Suppurativa (HS) 1 0 1
High Blood Pressure (Hypertension, HBP), BBBBB,111 24 135
High Cholesterol (Hyperlipidemia) 14 3 17
Hip Dysplasia 1 0 1
Hip Replacement 4 2 6
Hirsutism 1 0 1
HIV 4 1 5
Human Papillomavirus (Human Papillomavirus (HPV) 1 0 1
Hydrocephalus 1 0 1
Hyperaldosteronism 1 0 1
Hyperhidrosis 2 0 2
Hyperkalemia 2 0 2
Hypermobility Syndrome 3 0 3
Hyperparathyroidism 0 1 1
Hypersomnia 2 0 2
Hypoglycemia (Low Blood Sugar) 2 0 2
Hypoparathyroidism 2 0 2
Hypothyroidism 31 0 31
Hypotonia 1 0 1
Hypoxic Ischemic Encephalopathy (HIE) 0 1 1
Immune Thrombocytopenic Purpura (ITP) 2 0 2
Incontinence 12 6 18
Insomnia 8 0 8
Intellectual Disability 0 1 1
Interstitial Cystitis (IC) 1 0 1
Interstitial Lung Disease (ILD) 1 0 1
Intracranial Hemorrhage (Brain Bleeds) 0 1 1
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,3 0 3
Irritable Bowel Syndrome (IBS) 12 2 14
Juvenile Arthritis (JA) 1 0 1
Kaposi Sarcoma (KS) 1 0 1
Kawasaki Disease 1 0 1
Kidney Disease 22 6 28
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 6 2 8
Lactose Intolerance 0 1 1
Laryngeal Cancer 1 0 1
Laryngomalacia 2 0 2
Leukemia 0 3 3
Lipedema 11 0 11
Liposarcoma 1 0 1
Liver Cancer 1 2 3
Liver Disease (not hepatitis) 13 0 13
Loin Pain Hematuria Syndrome (LPHS) 1 0 1
Loss of Mobility 4 1 5
Lung Cancer 2 4 6
Lung Disease 3 1 4
Lupus 11 0 11
Lyme Disease 1 0 1
Lymphedema 13 1 14
Lymphoma 1 0 1
Macular Degeneration 3 0 3
Malabsorption 1 0 1
Marfan Syndrome (MFS) 2 0 2
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,2 0 2
McCune-Albright Syndrome (MAS) 1 0 1
Memory Loss 1 3 4
Meniere's Disease (MD) 1 0 1
Menopause 1 0 1
Mental Illness 8 3 11
Microscopic Colitis 1 0 1
Migraine 41 1 42
Mixed Connective Tissue Disease (MCTD) 1 0 1
Moebius Syndrome 1 0 1
Monoclonal gammopathy of undetermined significance (MGUS) 1 0 1
Mood Disorder 3 0 3
Multiple Myeloma (MM) 0 1 1
Multiple Sclerosis (MS) 26 8 34
Muscle Spasms 0 1 1
Muscular Dystrophy (MD) 2 0 2
Myasthenia Gravis (MG) 2 0 2
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 2 0 2
Myopathy 1 0 1
Myositis 3 0 3
Narcolepsy 2 0 2
Neck Surgery 0 1 1
Neuralgia 2 0 2
Neurofibromatosis (NF) 1 0 1
Neurogenic Bladder 1 0 1
Neurogenic Bowel 1 0 1
Neuropathy 18 3 21
Neutropenia 1 0 1
Obesity 49 7 56
Obsessive Compulsive Disorder (OCD) 2 0 2
Oral Cancer 1 1 2
Organ Transplant 1 1 2
Osteoarthritis (OA) 59 10 69
Osteomyelitis (OM) 0 1 1
Osteopenia 3 0 3
Osteoporosis 16 5 21
Other, please specify, BBBBB,74 18 92
Ovarian Cancer 2 0 2
Ovarian Cyst 1 0 1
Overactive Bladder (OAB) 7 0 7
Pancreatic Cancer 1 0 1
Pancreatitis 4 1 5
Paralysis 12 5 17
Parkinson's Disease (PD) 3 9 12
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 0 1
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 2 0 2
Periodontitis (Gum Disease) 1 0 1
Periventricular Leukomalacia (PVL) 1 0 1
Personality Disorder 2 1 3
Pneumonia 1 0 1
Polio 1 0 1
Polychrondritis 0 1 1
Polycystic Ovarian Syndrome (PCOS) 3 0 3
Polycythemia Vera (PV) 1 0 1
Polymyalgia Rheumatica (PMR) 1 0 1
Porphyria 1 0 1
Posttraumatic Stress Disorder (PTSD) 47 3 50
Premenstrual Dysphoric Disorder (PMDD) 1 0 1
Primary Ciliary Dyskinesia (PCD) 3 0 3
Primary Immunodeficiency (PID) 1 0 1
Progressive Supranuclear Palsy (PSP) 1 1 2
Prolactinoma 1 0 1
Prostate Cancer 2 3 5
Psoriasis 21 0 21
Psoriatic Arthritis (PsA) 1 0 1
Ptosis (Drooping eye, Blepharoptosis), BBBBB,1 0 1
Pulmonary Arterial Hypertension (PAH) 3 0 3
Pulmonary Embolism (PE) 10 0 10
Pulmonary Fibrosis (PF) 1 0 1
Pyloric Stenosis (Gastric Outlet Obstruction) 1 0 1
Raynaud's Syndrome 2 0 2
Restless Leg Syndrome (RLS) 14 1 15
Rheumatoid Arthritis (RA) 21 11 32
Rosacea 1 0 1
Sarcoidosis 2 0 2
Scheuermann's Kyphosis 1 0 1
Schizencephaly 1 0 1
Schizophrenia 9 3 12
Sciatica 2 0 2
Scleroderma 3 0 3
Scoliosis 15 1 16
Secondary Adrenal insufficiency 4 1 5
Sensory Processing Disorder (SPD) 1 0 1
Shingles (Herpes Zoster) 2 0 2
Sickle Cell Disease (SCD): Sickle Cell Trait 1 0 1
Sinusitis 4 0 4
Sjogren's Syndrome (SjS, SS), BBBBB,1 0 1
Skin Cancer 1 0 1
Skin Cancer- Melanoma 1 0 1
Sleep Apnea (OSA) 8 1 9
Sleep Disorder 16 0 16
Spasticity 3 1 4
Speech Impairment 1 0 1
Spina Bifida (SB) 2 0 2
Spinal Cord 26 6 32
Spinal Muscular Atrophy (SMA) 1 1 2
Sprengel Deformity 1 0 1
Squamous Cell Carcinoma (SCC) 4 0 4
Stomach Cancer 0 1 1
Stomach Ulcer 0 1 1
Stroke 21 16 37
Subglottic Stenosis (SGS) 1 0 1
Syringomyelia 1 0 1
Temporomandibular joint (TMJ) 1 0 1
Throat Cancer 1 0 1
Thrombocytopenia (TCP) 1 0 1
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 1 0 1
Thyroid Nodule 2 0 2
Tics 1 0 1
Trisomy X (XXX) 0 1 1
Tuberculosis 3 0 3
Ulcerative Colitis (UC) 6 2 8
Urinary Tract Infection (UTI) 1 0 1
Urticaria (Hives) 1 0 1
Uterine Cancer 3 0 3
Uterine Polyps 1 0 1
Uveitis 1 0 1
Varicose Veins 2 0 2
Vasculitis 1 1 2
Vertigo 2 1 3
Vision Impairment 22 5 27
Vitamin B12 Deficiency 5 1 6
Vitamin D Deficiency 3 1 4
Vitiligo 1 0 1
Von Willebrand Disease (VWD) 2 0 2
Wheelchair 5 3 8
Wolff-Parkinson-White (WPW) Syndrome 1 0 1
France
Disease/Condition Patients Caregivers Total
Acne 8 1 9
Addiction 9 4 13
Addison's Disease (Adrenal insufficiency) 0 1 1
Adenomyosis 5 1 6
Adhesive Capsulitis (Frozen Shoulder) 0 1 1
Aicardi Syndrome 1 0 1
Allergies 49 1 50
Alopecia 1 0 1
Alzheimer's Disease (AD) 4 62 66
Amputation 5 2 7
Amyotrophic Lateral Sclerosis (ALS) 0 2 2
Anemia 11 0 11
Aneurysm 4 1 5
Ankylosing Spondylitis (AS) 28 1 29
Antiphospholipid Syndrome (APS) 2 0 2
Anxiety 48 1 49
Aortic Disease 3 0 3
Aphasia 0 1 1
Aplastic Anemia (AA) 2 0 2
Appendix Cancer 1 0 1
Arteriovenous Malformation (AVM) 0 1 1
Asthma 109 5 114
Ataxia 0 1 1
Atrial Fibrillation (AFIB) 1 2 3
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,9 4 13
Autism 13 20 33
Autoimmune Disease 4 0 4
Barth Syndrome (BTHS) 1 0 1
Basal Cell Carcinoma (BCC) 0 1 1
Bell's Palsy 1 0 1
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,5 0 5
Bile Duct Cancer (Cholangiocarcinoma) 1 0 1
Bipolar 42 10 52
Bladder Cancer 3 2 5
Blood Cancer 0 1 1
Bone Cancer 1 0 1
Borderline Personality Disorder (BPD) 13 1 14
Brain Aneurysm 1 0 1
Brain Cancer 2 2 4
Brain Damage 1 0 1
Brain Tumor 4 1 5
Breast Cancer (BC) 43 7 50
Bronchitis 6 0 6
Bulging Disc 14 1 15
Calcinosis 1 0 1
Campomelic Dysplasia 1 0 1
Cancer 79 39 118
Candidiasis (Yeast Infection) 1 0 1
Carcinoid Cancer 0 1 1
Carcinoma 2 0 2
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Carpal Tunnel Syndrome (CTS) 4 0 4
Cauda Equina Syndrome 1 0 1
Celiac Disease (CCD) 3 0 3
Cellulitis 1 0 1
Cerebral Palsy (CP) 2 1 3
Cervical Cancer 2 2 4
Cervical Dystonia 1 0 1
Chiari Malformation (CM) 1 0 1
Chronic Fatigue Syndrome (CFS, ME), BBBBB,14 0 14
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 2 0 2
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 36 3 39
Chronic Pain 36 2 38
Chronic Venous Insufficiency (CVI) 2 0 2
Cluster Headache 5 0 5
Cognitive Impairment (CI) 4 3 7
Colon Cancer (CRC) 2 3 5
Colon Polyps 1 0 1
Colorectal Cancer (CRC) 1 1 2
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,9 2 11
Congenital Myopathy 1 0 1
Constipation 4 0 4
Coronavirus (COVID-19) 24 4 28
Crohn's Disease (CD) 19 10 29
Cushing's Disease (CS) 3 0 3
Cytomegalovirus (CMV) 0 1 1
Deep Vein Thrombosis (DVT) 4 0 4
Degenerative Disc Disease (DDD) 15 3 18
Depression (MDD) 156 14 170
Developmental Delay (DD) 0 2 2
Diabetes (DM) 132 42 174
Disabled 7 5 12
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,3 0 3
Diverticulitis 2 0 2
Down Syndrome (DS) 0 1 1
Dysautonomia 3 0 3
Dyskeratosis Congenita 1 0 1
Dyslexia 2 0 2
Dysmenorrhea (Painful Menstruation) 2 0 2
Dystonia 1 1 2
Eating Disorder 14 1 15
Eczema (Atopic Dermatitis) 20 2 22
Edema 5 0 5
Ehlers-Danlos Syndrome (EDS) 8 1 9
Elephantiasis (Lymphatic Filariasis) 0 1 1
Encephalitis 1 0 1
Endometriosis 35 0 35
Enlarged Spleen (Splenomegaly) 0 1 1
Eosinophilic Esophagitis (EOE) 0 1 1
Epicondylitis (Tennis Elbow) 1 1 2
Epilepsy 28 19 47
Erectile Dysfunction (ED) 1 0 1
Esophageal Cancer 0 1 1
Essential Thrombocythemia 1 0 1
Essential Tremor 1 0 1
Familial Hypercholesterolemia (FH) 18 0 18
Familial Mediterranean Fever (FMF) 0 1 1
Fibrocystic Breasts 1 0 1
Fibromuscular Dysplasia (FMD) 2 0 2
Fibromyalgia (FM) 99 5 104
Fragile X Syndrome (FXS) 1 0 1
Friedreich's Ataxia (FA) 0 1 1
Functional Neurological Disorder (FND) 5 0 5
Gall Stones 3 0 3
Gastric Bypass 1 0 1
Gastric Dysmotility 1 0 1
Gastritis 6 1 7
Gastroesophageal Reflux Disease (GERD) 16 1 17
Gastroparesis (GP) 1 0 1
Giant Cell Arteritis (GCA) 0 1 1
Gluten Intolerance 2 0 2
Glycogen Storage Disease (GSD) 0 1 1
Goiter 1 0 1
Goldenhar Syndrome 1 0 1
Gout 1 0 1
Grave's Disease (GD) 3 0 3
Guillain-Barre Syndrome (GBS) 0 1 1
Hashimoto's Disease (HT) 13 1 14
Head and Neck Cancer 2 0 2
Headache 8 1 9
Hearing Aid 4 0 4
Hearing Loss 10 2 12
Heart Disease 64 16 80
Hemochromatosis (Iron Overload) 1 0 1
Hemophilia 3 0 3
Hemorrhoids 3 0 3
Hepatitis 1 1 2
Hereditary Spastic Paraparesis (HSP) 1 0 1
Hereditary Spastic Paraplegia (HSP) 0 1 1
Hernia 11 1 12
Herpes (HSV) 2 0 2
Hidradenitis Suppurativa (HS) 3 1 4
High Blood Pressure (Hypertension, HBP), BBBBB,139 17 156
High Cholesterol (Hyperlipidemia) 15 2 17
Hip Replacement 1 3 4
HIV 7 1 8
Hodgkins Lymphoma 0 1 1
Human Growth Hormone Deficiency (GHD) 2 0 2
Human Papillomavirus (Human Papillomavirus (HPV) 6 0 6
Huntington's Disease (HD) 0 1 1
Hydrocephalus 2 1 3
Hyperaldosteronism 1 0 1
Hyperemesis Gravidarum (HG, Morning Sickness), BBBBB,1 0 1
Hypereosinophilic Syndrome (HES) 1 0 1
Hyperparathyroidism 7 0 7
Hypersomnia 2 0 2
Hyperthyroidism 15 1 16
Hypoglycemia (Low Blood Sugar) 3 0 3
Hypokalemia 1 0 1
Hypoparathyroidism 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 48 4 52
Incontinence 3 1 4
Infertility 3 0 3
Insomnia 22 3 25
Intellectual Disability 0 4 4
Interstitial Cystitis (IC) 2 0 2
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,4 0 4
Irritable Bowel Syndrome (IBS) 26 2 28
Juvenile Arthritis (JA) 1 1 2
Kidney Disease 15 5 20
Knee Replacement 3 1 4
Lactose Intolerance 1 0 1
Laryngeal Cancer 1 1 2
Learning Disability 0 1 1
Leiomyosarcoma 1 0 1
Leukemia 2 1 3
Lichen Planus 1 0 1
Liposarcoma 0 1 1
Liver Cancer 3 3 6
Liver Disease (not hepatitis) 7 2 9
Loss of Mobility 9 5 14
Low Blood Pressure (Hypotension) 4 0 4
Lung Cancer 11 10 21
Lung Disease 11 3 14
Lupus 18 1 19
Lyme Disease 3 0 3
Lymphedema 2 0 2
Lymphoma 4 0 4
Macular Degeneration 1 2 3
Malignant Hyperthermia (MH) 1 0 1
Marfan Syndrome (MFS) 1 0 1
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,1 0 1
Median arcuate ligament syndrome (MALS) 0 1 1
Memory Loss 5 8 13
Meniere's Disease (MD) 0 1 1
Menopause 8 0 8
Mental Illness 2 4 6
Microscopic Colitis 1 0 1
Migraine 62 3 65
Mood Disorder 10 2 12
Multiple Myeloma (MM) 3 0 3
Multiple Sclerosis (MS) 48 11 59
Muscle Spasms 1 0 1
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 1 0 1
Myeloproliferative Neoplasms 1 1 2
Myopathy 3 2 5
Narcolepsy 2 0 2
Nasal Polyps 1 0 1
Neck Cancer 1 0 1
Neuralgia 9 0 9
Neuroendocrine Cancer (NET) 0 1 1
Neurofibromatosis (NF) 2 0 2
Neurogenic Bladder 3 0 3
Neuromyelitis optica (NMO) 2 0 2
Neuropathy 21 2 23
Non-Hodgkin's Lymphoma (NHL) 3 1 4
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 2 0 2
Obesity 53 5 58
Obsessive Compulsive Disorder (OCD) 7 2 9
Oppositional Defiant Disorder (ODD) 1 0 1
Oral Cancer 1 0 1
Organ Transplant 6 5 11
Osteoarthritis (OA) 62 9 71
Osteoporosis 11 2 13
Other, please specify, BBBBB,108 24 132
Ovarian Cancer 3 0 3
Ovarian Cyst 3 0 3
Overactive Bladder (OAB) 2 2 4
Pancreatic Cancer 1 0 1
Pancreatitis 2 0 2
Paralysis 11 11 22
Parkinson's Disease (PD) 3 16 19
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 0 1 1
Pelvic Floor Dysfunction 0 1 1
Pemphigus / Pemphigoid 1 0 1
Periodontitis (Gum Disease) 2 0 2
Personality Disorder 4 0 4
Pituitary Tumor 2 0 2
Plantar Fasciitis (PF) 1 0 1
Pneumonia 2 1 3
Polio 2 0 2
Polycystic Ovarian Syndrome (PCOS) 11 0 11
Polymicrogyria (PMG) 0 1 1
Pompe Disease 1 0 1
Post-Polio Syndrome (PPS) 1 0 1
Posttraumatic Stress Disorder (PTSD) 20 1 21
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 1 0 1
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Prolactinoma 1 0 1
Prostate Cancer 3 4 7
Protein Deficiency 2 0 2
Psoriasis 29 0 29
Psoriatic Arthritis (PsA) 9 0 9
Pulmonary Arterial Hypertension (PAH) 7 0 7
Pulmonary Embolism (PE) 2 0 2
Pulmonary Fibrosis (PF) 1 1 2
Raynaud's Syndrome 4 0 4
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,2 2 4
Restless Leg Syndrome (RLS) 7 0 7
Rheumatoid Arthritis (RA) 34 10 44
Rosacea 3 0 3
Sacroiliac Joint Disease (SI) 1 0 1
Sarcoidosis 3 0 3
Sarcoma 1 0 1
Scheuermann's Kyphosis 2 0 2
Schizophrenia 5 8 13
Sciatica 15 0 15
Scleroderma 1 1 2
Scoliosis 17 1 18
Secondary Adrenal insufficiency 1 0 1
Sensory Processing Disorder (SPD) 1 0 1
Sepsis 1 0 1
Shingles (Herpes Zoster) 1 0 1
Shoulder Replacement 0 1 1
Sickle Cell Disease (SCD) 1 0 1
Sinusitis 8 0 8
Sjogren's Syndrome (SjS, SS), BBBBB,5 2 7
Skin Cancer 0 1 1
Skin Cancer- Melanoma 3 0 3
Sleep Apnea (OSA) 27 4 31
Sleep Disorder 14 1 15
Spasticity 1 0 1
Speech Impairment 3 1 4
Spina Bifida (SB) 2 0 2
Spinal Cord 22 0 22
Spinal Muscular Atrophy (SMA) 2 2 4
Sprengel Deformity 1 0 1
Squamous Cell Carcinoma (SCC) 1 0 1
Stomach Cancer 2 1 3
Stomach Ulcer 12 0 12
Stroke 17 21 38
Syringomyelia 2 0 2
Tarlov Cysts 1 0 1
Temporomandibular joint (TMJ) 2 0 2
Tendonitis 15 0 15
Testicular Cancer 1 0 1
Thalassemia 1 0 1
Thoracic Outlet Syndrome (TOS) 1 0 1
Throat Cancer 1 2 3
Thrombocytopenia (TCP) 1 0 1
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 5 0 5
Thyroid Nodule 8 0 8
Thyroidectomy 1 0 1
Tics 2 0 2
Tuberculosis 3 0 3
Ulcerative Colitis (UC) 5 1 6
Undifferentiated Connective Tissue Disease (UCTD) 1 0 1
Urinary Tract Infection (UTI) 2 0 2
Urticaria (Hives) 2 0 2
Uterine Cancer 6 1 7
Uterine Fibroids 3 0 3
Uveitis 2 1 3
Varicose Veins 6 0 6
Vasculitis 1 0 1
Vertebral Artery Dissection (VAD) 1 0 1
Vertigo 2 0 2
Vision Impairment 28 9 37
Vitamin D Deficiency 1 0 1
Vitiligo 5 0 5
Von Willebrand Disease (VWD) 1 0 1
Vulvodynia 1 0 1
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,1 0 1
Wheelchair 16 21 37
Wolff-Parkinson-White (WPW) Syndrome 0 1 1
Italy
Disease/Condition Patients Caregivers Total
Achalasia 3 0 3
Acne 10 0 10
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 2 0 2
Addiction 17 6 23
Addison's Disease (Adrenal insufficiency) 6 1 7
Adenomyosis 19 0 19
Adhesive Capsulitis (Frozen Shoulder) 6 0 6
Adrenal Cortical Carcinoma (ACC) 1 1 2
Agenesis of the Corpus Callosum (ACC) 0 1 1
Allergies 217 9 226
Alopecia 21 0 21
Alpha 1 Antitrypsin Deficiency (A1AD) 1 0 1
Alternating Hemiplegia of Childhood (AHC) 1 0 1
Alzheimer's Disease (AD) 8 138 146
Amplified Musculoskeletal Pain Syndrome 4 0 4
Amputation 1 5 6
Amyloidosis 1 1 2
Amyotrophic Lateral Sclerosis (ALS) 2 12 14
Anal Cancer 0 1 1
Anemia 81 6 87
Aneurysm 20 2 22
Ankylosing Spondylitis (AS) 24 1 25
Anosmia (loss of smell) 3 0 3
Antiphospholipid Syndrome (APS) 9 1 10
Antisynthetase Syndrome 1 0 1
Anxiety 300 16 316
Aortic Disease 15 12 27
Aphasia 0 2 2
Aplastic Anemia (AA) 1 0 1
Arachnoiditis 1 1 2
Arteriovenous Malformation (AVM) 3 0 3
Arthrogryposis Multiplex Congenita (AMC) 1 0 1
Asthma 215 16 231
Ataxia 2 2 4
Atrial Fibrillation (AFIB) 20 15 35
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,12 8 20
Auditory Processing Disorder (APD) 2 0 2
Autism 10 26 36
Autoimmune Disease 19 1 20
Autoimmune Encephalitis (AE) 0 1 1
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,6 2 8
Barrett's Esophagus 1 0 1
Basal Cell Carcinoma (BCC) 4 0 4
Behcet's Disease (BD) 7 1 8
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,26 2 28
Beta Thalassemia (Cooley s Anemia) 5 2 7
Bile Duct Cancer (Cholangiocarcinoma) 0 1 1
Bipolar 95 15 110
Bladder Cancer 7 3 10
Blood Cancer 3 1 4
Blood Clot 8 1 9
Blood Clotting Disorder 8 1 9
Bone Cancer 3 1 4
Borderline Personality Disorder (BPD) 43 5 48
Brain Aneurysm 13 0 13
Brain Cancer 2 0 2
Brain Damage 0 1 1
Brain Tumor 15 4 19
BRCA Mutation 2 0 2
Breast Cancer (BC) 96 7 103
Bronchiectasis 6 0 6
Bronchitis 25 3 28
Bronchopulmonary Dysplasia (BPD) 2 0 2
Bulging Disc 24 0 24
Bursitis 6 0 6
Campomelic Dysplasia 1 0 1
Cancer 164 26 190
Candidiasis (Yeast Infection) 10 0 10
Carcinoid Cancer 1 0 1
Carcinoma 28 2 30
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 28 1 29
Castleman Disease (CD) 0 1 1
Celiac Disease (CCD) 59 6 65
Cellulitis 1 0 1
Central Pain Syndrome (CPS) 1 0 1
Cerebral Palsy (CP) 0 1 1
Cervical Cancer 6 0 6
Cervical Dystonia 5 0 5
Charge Syndrome 0 1 1
Chiari Malformation (CM) 13 2 15
Chronic Fatigue Syndrome (CFS, ME), BBBBB,53 0 53
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 8 4 12
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 62 22 84
Chronic Pain 106 2 108
Chronic Venous Insufficiency (CVI) 27 4 31
Cleft 3 0 3
Clubfoot 2 1 3
Cluster Headache 25 0 25
Cognitive Impairment (CI) 1 3 4
Colon Cancer (CRC) 8 3 11
Colon Polyps 2 0 2
Colonic Inertia 2 0 2
Color Blind 3 0 3
Colorectal Cancer (CRC) 5 0 5
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,2 0 2
Congenital Myopathy 6 0 6
Constipation 12 5 17
Conversion Disorder (CD) 4 0 4
Coronavirus (COVID-19) 12 4 16
Costochondritis 1 0 1
Cowden Syndrome (CS) 1 0 1
Craniocervical Instability (CCI) 6 0 6
Crohn's Disease (CD) 31 7 38
Cushing's Disease (CS) 5 0 5
Cyclic Vomiting Syndrome (CVS) 2 0 2
Cystic Fibrosis (CF) 4 3 7
Cystinosis 1 1 2
Dandy Walker Syndrome (DWS) 1 0 1
Deep Vein Thrombosis (DVT) 19 6 25
Degenerative Disc Disease (DDD) 24 2 26
Deletion Duplication Syndrome 1 1 2
Depression (MDD) 306 28 334
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 7 0 7
Desmoid Tumor 1 0 1
Developmental Delay (DD) 0 1 1
Diabetes (DM) 474 123 597
Disabled 5 2 7
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,3 0 3
Diverticulitis 32 2 34
Down Syndrome (DS) 0 6 6
Dupuytren's Contracture 1 1 2
Dwarfism 1 1 2
Dysautonomia 7 0 7
Dyslexia 2 0 2
Dysmenorrhea (Painful Menstruation) 21 0 21
Dysphagia (Difficulty Swallowing) 13 5 18
Dystonia 3 1 4
Eating Disorder 49 1 50
Eczema (Atopic Dermatitis) 62 1 63
Edema 2 0 2
Ehlers-Danlos Syndrome (EDS) 7 0 7
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 0 1 1
Endometriosis 110 1 111
Enlarged Spleen (Splenomegaly) 1 0 1
Eosinophilic Colitis (EC) 1 0 1
Eosinophilic Esophagitis (EOE) 5 0 5
Eosinophilic Gasteroenteritis (EG) 4 0 4
Epicondylitis (Tennis Elbow) 4 0 4
Epidermolysis Bullosa (EB) 4 0 4
Epilepsy 118 49 167
Epstein Barr Syndrome (EBV) 1 0 1
Erectile Dysfunction (ED) 9 0 9
Erythema Nodosum 2 0 2
Erythromelalgia 1 0 1
Esophageal Cancer 0 2 2
Esophageal Varices 3 0 3
Essential Thrombocythemia 3 1 4
Essential Tremor 9 2 11
Ewing's Sarcoma 2 0 2
Exocrine Pancreatic Insufficiency (EPI) 2 1 3
Familial Adenomatous Polyposis (FAP) 2 0 2
Familial Hypercholesterolemia (FH) 48 4 52
Familial Mediterranean Fever (FMF) 0 1 1
Fibrocystic Breasts 7 0 7
Fibrodysplasia Ossificans Progressiva (FOP) 1 0 1
Fibromyalgia (FM) 375 6 381
Fibrous Dysplasia 1 0 1
Fistula 5 0 5
Fragile X Syndrome (FXS) 1 0 1
Friedreich's Ataxia (FA) 2 1 3
Functional Neurological Disorder (FND) 4 1 5
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 3 0 3
Gall Stones 20 0 20
Ganglioneuroblastoma 0 1 1
Gastric Bypass 10 0 10
Gastric Dysmotility 1 1 2
Gastritis 103 4 107
Gastroesophageal Reflux Disease (GERD) 150 3 153
Gastrointestinal Stromal Tumor (GIST) 3 0 3
Gastroparesis (GP) 1 0 1
Gastrostomy Tube (G-tube) 1 0 1
Gender Dysphoria 2 0 2
Gluten Intolerance 21 0 21
Glycogen Storage Disease (GSD) 0 1 1
Goiter 6 0 6
Gout 7 1 8
Graft Versus Host Disease (GVHD) 0 1 1
Grave's Disease (GD) 13 1 14
Guillain-Barre Syndrome (GBS) 2 1 3
Hashimoto's Disease (HT) 237 9 246
Head and Neck Cancer 1 2 3
Headache 90 3 93
Hearing Aid 8 4 12
Hearing Loss 71 18 89
Heart Disease 289 86 375
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 17 0 17
Hemorrhoids 29 1 30
Hepatitis 39 1 40
Hereditary Angioedema (HAE) 3 0 3
Hereditary Spastic Paraparesis (HSP) 3 3 6
Hereditary Spastic Paraplegia (HSP) 2 1 3
Hernia 133 6 139
Herpes (HSV) 6 0 6
Hidradenitis Suppurativa (HS) 10 0 10
High Blood Pressure (Hypertension, HBP), BBBBB,563 81 644
High Cholesterol (Hyperlipidemia) 153 15 168
Hip Dysplasia 2 0 2
Hip Replacement 5 2 7
Hirsutism 7 0 7
HIV 26 4 30
Hodgkins Lymphoma 10 1 11
Holoprosencephaly (HPE) 0 1 1
Human Growth Hormone Deficiency (GHD) 8 5 13
Human Papillomavirus (Human Papillomavirus (HPV) 16 2 18
Huntington's Disease (HD) 1 3 4
Hydrocephalus 7 0 7
Hyperaldosteronism 2 0 2
Hyperemesis Gravidarum (HG, Morning Sickness), BBBBB,3 0 3
Hyperhidrosis 9 1 10
Hypermobility Syndrome 1 0 1
Hyperparathyroidism 6 0 6
Hypersomnia 1 0 1
Hyperthyroidism 50 3 53
Hypocalcemia 4 0 4
Hypoglycemia (Low Blood Sugar) 8 1 9
Hypohidrotic Ectodermal Dysplasia (HED) 2 0 2
Hypokalemia 3 0 3
Hypokalemic Periodic Paralysis 1 0 1
Hyponatremia 0 1 1
Hypoparathyroidism 8 0 8
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 329 12 341
Hypotonia 4 0 4
Hypoxic Ischemic Encephalopathy (HIE) 1 1 2
Hysterectomy 6 1 7
Immune Thrombocytopenic Purpura (ITP) 3 0 3
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 18 8 26
Incontinentia Pigmenti (IP) 1 0 1
Infertility 13 1 14
Insomnia 72 2 74
Intellectual Disability 1 6 7
Interstitial Cystitis (IC) 17 1 18
Interstitial Lung Disease (ILD) 1 1 2
Intracranial Hemorrhage (Brain Bleeds) 1 2 3
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,4 0 4
Irritable Bowel Syndrome (IBS) 98 2 100
Juvenile Arthritis (JA) 14 0 14
Kaposi Sarcoma (KS) 1 2 3
Kidney Disease 99 24 123
Klinefelter Syndrome (XXY Syndrome) 4 1 5
Klippel-Trenaunay Syndrome (KTS) 1 0 1
Knee Replacement 11 2 13
Lactose Intolerance 43 0 43
Laryngeal Cancer 1 0 1
Learning Disability 1 1 2
Legg-Calve-Perthes Disease (LCPD) 1 0 1
Leiomyosarcoma 1 0 1
Leukemia 13 8 21
Leukopenia 1 0 1
Lichen Planus 4 0 4
Lichen Sclerosis (LS) 8 0 8
Lipedema 7 1 8
Liposarcoma 0 1 1
Liver Cancer 3 6 9
Liver Disease (not hepatitis) 50 4 54
Loss of Mobility 11 5 16
Low Blood Pressure (Hypotension) 41 2 43
Low Testosterone 1 0 1
Lung Cancer 17 5 22
Lung Disease 28 13 41
Lupus 57 3 60
Lyme Disease 2 0 2
Lymphedema 17 2 19
Lymphocytic Colitis 2 0 2
Lymphoma 2 1 3
Macular Degeneration 8 4 12
Malabsorption 7 0 7
Marfan Syndrome (MFS) 2 0 2
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,5 2 7
Memory Loss 3 6 9
Meniere's Disease (MD) 8 0 8
Menopause 23 0 23
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,2 0 2
Mental Illness 6 5 11
Mesothelioma 0 1 1
Metabolic Syndrome 31 2 33
Metatarsalgia 2 0 2
Microcephaly 0 1 1
Microscopic Colitis 4 0 4
Migraine 206 4 210
Mitochondrial Disease 2 1 3
Mixed Connective Tissue Disease (MCTD) 6 0 6
Monoclonal gammopathy of undetermined significance (MGUS) 9 0 9
Mood Disorder 45 1 46
MTHFR 16 1 17
Multiple Endocrine Neoplasia (MEN) 2 0 2
Multiple Myeloma (MM) 7 2 9
Multiple Sclerosis (MS) 121 20 141
Multiple System Atrophy (MSA) 1 0 1
Muscle Spasms 9 1 10
Muscular Dystrophy (MD) 12 4 16
Myasthenia Gravis (MG) 23 2 25
Mycobacterium Avium Complex (MAC) 1 0 1
Myelodysplastic syndrome (MDS) 2 1 3
Myelofibrosis 1 0 1
Myopathy 7 2 9
Myositis 3 0 3
Narcolepsy 6 1 7
Nasal Polyps 9 0 9
Neck Cancer 1 0 1
Neuralgia 14 1 15
Neuroendocrine Cancer (NET) 1 0 1
Neurofibromatosis (NF) 9 2 11
Neurogenic Bladder 11 1 12
Neurogenic Bowel 2 0 2
Neuromyelitis optica (NMO) 1 0 1
Neuropathy 75 10 85
Neutropenia 1 1 2
Non-Hodgkin's Lymphoma (NHL) 11 2 13
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 13 1 14
Obesity 182 7 189
Obsessive Compulsive Disorder (OCD) 24 3 27
Oppositional Defiant Disorder (ODD) 0 3 3
Organ Transplant 19 3 22
Osteoarthritis (OA) 156 21 177
Osteogenesis Imperfecta (OI) 1 0 1
Osteomyelitis (OM) 2 0 2
Osteopenia 18 0 18
Osteoporosis 77 11 88
Other, please specify, BBBBB,433 59 492
Ovarian Cancer 4 0 4
Ovarian Cyst 15 0 15
Overactive Bladder (OAB) 8 2 10
Paget's 2 1 3
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 5 2 7
Pancreatitis 12 2 14
Paraganglioma 1 1 2
Paralysis 12 7 19
Parkinson's Disease (PD) 21 32 53
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 0 1
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 3 0 3
Pelvic Inflammatory Disease (PID) 3 0 3
Pemphigus / Pemphigoid 5 0 5
Periodic Limb Movement Disorder (PLMD) 1 2 3
Periodontitis (Gum Disease) 11 1 12
Personality Disorder 11 2 13
Pheochromocytoma (PCC) 1 0 1
Pituitary Tumor 9 0 9
Plantar Fasciitis (PF) 6 0 6
Pneumonia 7 0 7
Poland Syndrome 1 0 1
Polio 2 4 6
Polycystic Ovarian Syndrome (PCOS) 84 2 86
Polycythemia Vera (PV) 8 1 9
Polymyalgia Rheumatica (PMR) 4 0 4
Polymyositis (PM) 4 0 4
Pompe Disease 0 1 1
Porphyria 1 0 1
Post-Polio Syndrome (PPS) 1 0 1
Posttraumatic Stress Disorder (PTSD) 22 1 23
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 1 0 1
Premenstrual Dysphoric Disorder (PMDD) 4 0 4
Primary Immunodeficiency (PID) 5 0 5
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Progressive Supranuclear Palsy (PSP) 0 3 3
Prolactinoma 2 0 2
Prostate Cancer 7 3 10
Protein Deficiency 2 1 3
Prurigo Nodularis (PN) 2 0 2
Psoriasis 167 14 181
Psoriatic Arthritis (PsA) 31 2 33
Pulmonary Arterial Hypertension (PAH) 8 1 9
Pulmonary Embolism (PE) 19 5 24
Pulmonary Fibrosis (PF) 9 1 10
Pyloric Stenosis (Gastric Outlet Obstruction) 3 0 3
Raynaud's Syndrome 24 1 25
Rectal Cancer (CRC) 1 1 2
Rectocele 5 0 5
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,9 1 10
Restless Leg Syndrome (RLS) 21 2 23
Retroperitoneal Fibrosis 0 1 1
Rheumatoid Arthritis (RA) 133 21 154
Rickets (Osteomalacia) 1 0 1
Rosacea 4 0 4
Sacroiliac Joint Disease (SI) 2 1 3
Sarcoidosis 7 0 7
Sarcoma 1 0 1
Scheuermann's Kyphosis 3 0 3
Schizencephaly 0 1 1
Schizophrenia 12 16 28
Sciatica 22 1 23
Scleroderma 15 2 17
Scoliosis 62 5 67
Secondary Adrenal insufficiency 0 1 1
Sensory Processing Disorder (SPD) 1 0 1
Sepsis 0 2 2
Shingles (Herpes Zoster) 7 1 8
Short Bowel Syndrome (SBS, Short Gut), BBBBB,1 0 1
Sickle Cell Disease (SCD) 3 0 3
Sinusitis 35 1 36
Sjogren's Syndrome (SjS, SS), BBBBB,32 1 33
Skin Cancer- Melanoma 19 2 21
Sleep Apnea (OSA) 52 1 53
Sleep Disorder 38 2 40
Small Intestinal Bacterial Overgrowth (SIBO) 3 0 3
Speech Impairment 1 1 2
Sphincter of Oddi Dysfunction 0 1 1
Spina Bifida (SB) 6 2 8
Spinal Cord 93 6 99
Spinal Muscular Atrophy (SMA) 1 1 2
Squamous Cell Carcinoma (SCC) 2 0 2
Stomach Cancer 1 1 2
Stomach Ulcer 15 2 17
Stroke 27 21 48
Subglottic Stenosis (SGS) 2 0 2
Syncope 2 0 2
Syringomyelia 9 0 9
Tarlov Cysts 3 1 4
Temporomandibular joint (TMJ) 3 0 3
Tendonitis 19 0 19
Testicular Cancer 1 0 1
Thalassemia 15 3 18
Thoracic Outlet Syndrome (TOS) 2 0 2
Throat Cancer 1 1 2
Thrombocytopenia (TCP) 11 2 13
Thyroid Cancer 16 0 16
Thyroid Eye Disease (TED) 3 1 4
Thyroid Nodule 52 2 54
Thyroidectomy 1 0 1
Tongue Cancer 0 1 1
Tourette Syndrome (TS) 2 3 5
Transient Global Amnesia (TGA) 3 2 5
Traumatic Brain Injury (TBI) 2 1 3
Trichotillomania (TTM) 2 1 3
Trigger Finger (Stenosing Tenosynovitis) 5 0 5
Tuberculosis 2 0 2
Ulcerative Colitis (UC) 37 3 40
Undifferentiated Connective Tissue Disease (UCTD) 22 0 22
Urea Cycle Disorder (UCD) 0 1 1
Urinary Tract Infection (UTI) 7 0 7
Urticaria (Hives) 20 0 20
Uterine Cancer 4 0 4
Uterine Fibroids 35 0 35
Uterine Polyps 6 0 6
Uveitis 2 0 2
VACTERL Syndrome 0 1 1
Vaginismus 1 0 1
Varicose Veins 17 2 19
Vasculitis 17 4 21
Vertigo 15 0 15
Vision Impairment 164 30 194
Vitamin B12 Deficiency 6 0 6
Vitamin D Deficiency 20 2 22
Vitiligo 17 1 18
Vocal Cord Dysfunction (VCD) 1 0 1
Von Willebrand Disease (VWD) 1 1 2
Vulvar Cancer 3 0 3
Vulvodynia 7 0 7
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma), BBBBB,2 0 2
Wegener's Granulomatosis with Polyangiitis (GPA) 5 0 5
Wheelchair 25 23 48
Wolff-Parkinson-White (WPW) Syndrome 3 0 3
Spain
Disease/Condition Patients Caregivers Total
Acne 12 1 13
Acromegaly 1 1 2
Addiction 17 3 20
Addison's Disease (Adrenal insufficiency) 4 0 4
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Allergies 157 7 164
Alopecia 6 0 6
Alpha 1 Antitrypsin Deficiency (A1AD) 2 0 2
Alzheimer's Disease (AD) 11 221 232
Amplified Musculoskeletal Pain Syndrome 0 1 1
Amputation 5 5 10
Amyloidosis 1 0 1
Amyotrophic Lateral Sclerosis (ALS) 1 7 8
Anal Cancer 2 1 3
Anemia 60 9 69
Aneurysm 3 2 5
Anhidrosis (Hypohydrosis) 1 0 1
Ankylosing Spondylitis (AS) 20 0 20
Anosmia (loss of smell) 1 0 1
Antiphospholipid Syndrome (APS) 8 1 9
Anxiety 317 31 348
Aortic Disease 4 2 6
Aphasia 0 1 1
Aplastic Anemia (AA) 2 1 3
Arachnoid Cyst 3 0 3
Arteriovenous Malformation (AVM) 2 0 2
Arthrogryposis Multiplex Congenita (AMC) 0 2 2
Asthma 182 20 202
Ataxia 0 2 2
Atrial Fibrillation (AFIB) 6 1 7
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD), BBBBB,31 18 49
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 1 1 2
Autism 9 29 38
Autoimmune Disease 6 1 7
Autoimmune Encephalitis (AE) 1 1 2
Avascular Necrosis (AVN, Osteonecrosis), BBBBB,2 0 2
Barrett's Esophagus 2 0 2
Behcet's Disease (BD) 6 0 6
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate), BBBBB,10 2 12
Beta Thalassemia (Cooley s Anemia) 2 1 3
Bile Acid Malabsorption (BAD) 1 0 1
Bipolar 46 11 57
Bladder Cancer 4 3 7
Blood Cancer 2 0 2
Blood Clot 2 1 3
Blood Clotting Disorder 2 2 4
Bone Cancer 2 2 4
Borderline Personality Disorder (BPD) 59 2 61
Brain Aneurysm 6 2 8
Brain Cancer 0 2 2
Brain Damage 2 2 4
Brain Tumor 5 5 10
BRCA Mutation 2 0 2
Breast Cancer (BC) 48 10 58
Breast Cancer in Men 1 6 7
Bronchiectasis 3 0 3
Bronchitis 26 7 33
Bulging Disc 7 0 7
Bursitis 7 0 7
Calcinosis 1 0 1
Cancer 102 62 164
Candidiasis (Yeast Infection) 9 1 10
Carcinoma 3 0 3
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Carpal Tunnel Syndrome (CTS) 22 0 22
Celiac Disease (CCD) 13 3 16
Cellulitis 1 0 1
Central Pain Syndrome (CPS) 1 1 2
Cerebral Palsy (CP) 2 7 9
Cervical Cancer 4 0 4
Cervical Dystonia 2 0 2
Chiari Malformation (CM) 6 1 7
Chronic Fatigue Syndrome (CFS, ME), BBBBB,88 3 91
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 2 1 3
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 38 12 50
Chronic Pain 127 11 138
Chronic Venous Insufficiency (CVI) 8 6 14
Cluster Headache 5 0 5
Cognitive Impairment (CI) 2 7 9
Colon Cancer (CRC) 10 15 25
Colon Polyps 8 0 8
Colorectal Cancer (CRC) 1 0 1
Complex Regional Pain Syndrome (CRPS, RSD), BBBBB,6 0 6
Congenital Adrenal Hyperplasia (CAH) 4 0 4
Constipation 7 1 8
Coronavirus (COVID-19) 24 3 27
Costochondritis 1 0 1
Craniocervical Instability (CCI) 3 0 3
Crohn's Disease (CD) 25 5 30
Cushing's Disease (CS) 4 1 5
Cystic Fibrosis (CF) 4 0 4
Cytomegalovirus (CMV) 4 0 4
Deep Vein Thrombosis (DVT) 13 7 20
Degenerative Disc Disease (DDD) 16 1 17
Deletion Duplication Syndrome 0 1 1
Depression (MDD) 344 64 408
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 3 2 5
Developmental Delay (DD) 0 6 6
Diabetes (DM) 247 153 400
Disabled 3 3 6
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder), BBBBB,4 1 5
Diverticulitis 12 3 15
Down Syndrome (DS) 0 5 5
Dupuytren's Contracture 1 0 1
Dysarthria (Slurred Speech) 1 1 2
Dysautonomia 4 0 4
Dyslexia 3 2 5
Dysmenorrhea (Painful Menstruation) 10 0 10
Dysphagia (Difficulty Swallowing) 4 4 8
Dystonia 0 1 1
Eating Disorder 36 1 37
Eczema (Atopic Dermatitis) 58 9 67
Edema 1 2 3
Ehlers-Danlos Syndrome (EDS) 8 0 8
Elephantiasis (Lymphatic Filariasis) 0 1 1
Empty Sella Syndrome (ESS) 1 0 1
Encephalocele 1 0 1
Endometrial Cancer 1 1 2
Endometriosis 39 0 39
Enlarged Spleen (Splenomegaly) 1 0 1
Eosinophilic Esophagitis (EOE) 3 0 3
Epicondylitis (Tennis Elbow) 5 0 5
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 68 59 127
Erectile Dysfunction (ED) 1 0 1
Erythema Nodosum 1 0 1
Esophageal Cancer 0 1 1
Essential Tremor 3 0 3
Familial Hypercholesterolemia (FH) 19 5 24
Fibrocystic Breasts 1 0 1
Fibrodysplasia Ossificans Progressiva (FOP) 1 0 1
Fibromuscular Dysplasia (FMD) 1 0 1
Fibromyalgia (FM) 329 20 349
Fibrous Dysplasia 2 0 2
Fistula 7 0 7
Foot Drop 1 0 1
FOXG1 Syndrome 0 1 1
Friedreich's Ataxia (FA) 1 2 3
Functional Neurological Disorder (FND) 3 0 3
Gall Stones 4 0 4
Gastric Bypass 1 0 1
Gastric Dysmotility 1 0 1
Gastritis 33 0 33
Gastroesophageal Reflux Disease (GERD) 23 1 24
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 1 0 1
Gastrostomy Tube (G-tube) 0 1 1
Gaucher Disease (GD) 1 0 1
Gluten Intolerance 10 0 10
Glycogen Storage Disease (GSD) 0 1 1
Goiter 1 0 1
Gout 5 2 7
Grave's Disease (GD) 3 0 3
Guillain-Barre Syndrome (GBS) 2 1 3
Hansen's Disease (Leprosy) 1 0 1
Hashimoto's Disease (HT) 23 1 24
Head and Neck Cancer 0 1 1
Headache 46 6 52
Hearing Aid 1 1 2
Hearing Loss 34 10 44
Heart Disease 96 78 174
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 3 1 4
Hemorrhoids 5 1 6
Hepatitis 12 4 16
Hereditary Angioedema (HAE) 2 1 3
Hereditary Spastic Paraparesis (HSP) 2 0 2
Hernia 99 6 105
Herpes (HSV) 5 2 7
Hidradenitis Suppurativa (HS) 4 1 5
High Blood Pressure (Hypertension, HBP), BBBBB,277 94 371
High Cholesterol (Hyperlipidemia) 103 28 131
Hip Dysplasia 4 2 6
Hip Replacement 2 3 5
Hirsutism 3 0 3
HIV 42 1 43
Hodgkins Lymphoma 1 0 1
Holoprosencephaly (HPE) 1 0 1
Human Growth Hormone Deficiency (GHD) 2 0 2
Human Papillomavirus (Human Papillomavirus (HPV) 18 0 18
Huntington's Disease (HD) 1 1 2
Hydrocephalus 3 7 10
Hypereosinophilic Syndrome (HES) 0 1 1
Hyperhidrosis 10 0 10
Hypermobility Syndrome 3 0 3
Hyperparathyroidism 5 0 5
Hypersomnia 5 1 6
Hyperthyroidism 39 6 45
Hypocalcemia 2 0 2
Hypoglycemia (Low Blood Sugar) 7 3 10
Hypokalemia 1 1 2
Hypoparathyroidism 3 0 3
Hypothyroidism 170 9 179
Hypotonia 0 4 4
Hypoxic Ischemic Encephalopathy (HIE) 2 0 2
Hysterectomy 5 0 5
Immune Thrombocytopenic Purpura (ITP) 1 2 3
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 12 5 17
Infertility 2 0 2
Insomnia 49 1 50
Intellectual Disability 1 6 7
Interstitial Cystitis (IC) 2 0 2
Interstitial Lung Disease (ILD) 1 2 3
Intracranial Hemorrhage (Brain Bleeds) 0 2 2
Intracranial Hypertension (IH, Pseudotumor Cerebri), BBBBB,5 1 6
Irritable Bowel Syndrome (IBS) 73 4 77
Juvenile Arthritis (JA) 4 0 4
Keratosis Pilaris (follicular keratosis) 1 1 2
Kidney Disease 39 22 61
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 11 8 19
Lactose Intolerance 15 0 15
Lambert-Eaton myasthenic syndrome (LEMS) 1 0 1
Langerhans Cell Histiocytosis (LCH) 2 0 2
Learning Disability 1 1 2
Leukemia 8 3 11
Leukocytosis 2 1 3
Leukodystrophy 0 1 1
Leukopenia 2 0 2
Lichen Planus 4 0 4
Lichen Sclerosis (LS) 1 0 1
Lipedema 2 0 2
Lipodystrophy 1 0 1
Lissencephaly 0 1 1
Liver Cancer 3 1 4
Liver Disease (not hepatitis) 29 4 33
Loin Pain Hematuria Syndrome (LPHS) 9 1 10
Loss of Mobility 12 19 31
Low Blood Pressure (Hypotension) 8 2 10
Low Testosterone 2 0 2
Lung Cancer 9 5 14
Lung Disease 19 9 28
Lupus 48 4 52
Lyme Disease 1 0 1
Lymphedema 7 1 8
Lymphocytic Colitis 2 0 2
Lymphoma 5 2 7
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 6 4 10
Macular Degeneration 1 2 3
Mastocytosis (Mast Cell Activating Disease, MCAD), BBBBB,3 0 3
Median arcuate ligament syndrome (MALS) 0 1 1
Memory Loss 8 10 18
Meniere's Disease (MD) 5 0 5
Menopause 14 0 14
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods), BBBBB,2 0 2
Mental Illness 8 6 14
Mesothelioma 1 1 2
Metabolic Syndrome 1 0 1
Migraine 216 9 225
Mitochondrial Disease 1 0 1
Mixed Connective Tissue Disease (MCTD) 1 0 1
Moebius Syndrome 0 1 1
Monoclonal gammopathy of undetermined significance (MGUS) 1 0 1
Mood Disorder 16 4 20
Mucopolysaccharidoses (MPS) 0 1 1
Multiple Myeloma (MM) 3 5 8
Multiple Sclerosis (MS) 60 17 77
Muscle Spasms 4 1 5
Muscular Dystrophy (MD) 7 2 9
Myasthenia Gravis (MG) 7 1 8
Myelodysplastic syndrome (MDS) 1 0 1
Myelofibrosis 1 0 1
Myopathy 4 0 4
Myositis 1 0 1
Narcolepsy 4 2 6
Neuralgia 17 0 17
Neuroendocrine Cancer (NET) 1 0 1
Neurofibromatosis (NF) 7 1 8
Neurogenic Bladder 3 2 5
Neuropathy 24 4 28
Neutropenia 0 1 1
Non-Hodgkin's Lymphoma (NHL) 3 1 4
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 1 1 2
Obesity 99 22 121
Obsessive Compulsive Disorder (OCD) 28 3 31
Oral Cancer 1 0 1
Organ Transplant 7 5 12
Organic Acidemia (OA) 1 0 1
Osteoarthritis (OA) 186 48 234
Osteomyelitis (OM) 1 0 1
Osteopenia 7 0 7
Osteoporosis 39 17 56
Other, please specify, BBBBB,184 46 230
Ovarian Cancer 7 3 10
Ovarian Cyst 5 0 5
Overactive Bladder (OAB) 3 1 4
Paget's 2 0 2
Pancreatic Cancer 3 0 3
Pancreatitis 6 0 6
Paralysis 6 14 20
Parkinson's Disease (PD) 16 45 61
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 1 2
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 1 0 1
Pelvic Inflammatory Disease (PID) 2 0 2
Pemphigus / Pemphigoid 1 0 1
Periodontitis (Gum Disease) 5 0 5
Persistent Genital Arousal Disorder 1 0 1
Personality Disorder 19 3 22
Pituitary Tumor 3 0 3
Plantar Fasciitis (PF) 9 0 9
Pneumonia 7 1 8
Polio 3 1 4
Polycystic Ovarian Syndrome (PCOS) 29 1 30
Polycythemia Vera (PV) 0 1 1
Polymyalgia Rheumatica (PMR) 3 3 6
Post-Polio Syndrome (PPS) 1 1 2
Posttraumatic Stress Disorder (PTSD) 9 2 11
Precocious Puberty 1 0 1
Premenstrual Dysphoric Disorder (PMDD) 2 0 2
Primary Immunodeficiency (PID) 0 3 3
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Progressive Supranuclear Palsy (PSP) 0 1 1
Prolactinoma 1 0 1
Prostate Cancer 9 4 13
Prurigo Nodularis (PN) 1 0 1
Psoriasis 64 9 73
Psoriatic Arthritis (PsA) 17 1 18
Ptosis (Drooping eye, Blepharoptosis), BBBBB,1 1 2
Pulmonary Arterial Hypertension (PAH) 8 0 8
Pulmonary Embolism (PE) 4 5 9
Pulmonary Fibrosis (PF) 6 2 8
Raynaud's Syndrome 20 1 21
Rectal Cancer (CRC) 0 2 2
Renal Cell Carcinoma (Kidney Cancer, RCC), BBBBB,2 1 3
Restless Leg Syndrome (RLS) 21 0 21
Retroperitoneal Fibrosis 1 0 1
Rheumatoid Arthritis (RA) 111 27 138
Rosacea 4 0 4
Sacroiliac Joint Disease (SI) 2 0 2
Sarcoidosis 4 1 5
Sarcoma 1 0 1
Scheuermann's Kyphosis 5 0 5
Schizophrenia 19 20 39
Sciatica 22 0 22
Scleroderma 9 0 9
Scoliosis 66 5 71
Secondary Adrenal insufficiency 7 3 10
Sensory Processing Disorder (SPD) 1 0 1
Shingles (Herpes Zoster) 3 0 3
Sinusitis 13 1 14
Sjogren's Syndrome (SjS, SS), BBBBB,11 1 12
Skin Cancer 2 1 3
Skin Cancer- Melanoma 6 1 7
Sleep Apnea (OSA) 42 4 46
Sleep Disorder 20 5 25
Small for Gestational Age SGA) 0 1 1
Small Intestinal Bacterial Overgrowth (SIBO) 2 1 3
Spasticity 0 1 1
Speech Impairment 2 1 3
Sphincter of Oddi Dysfunction 0 1 1
Spina Bifida (SB) 7 2 9
Spinal Cord 142 13 155
Spinal Muscular Atrophy (SMA) 3 2 5
Squamous Cell Carcinoma (SCC) 1 0 1
Stomach Cancer 1 1 2
Stomach Ulcer 6 2 8
Stroke 26 32 58
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 1 0 1
Syncope 1 2 3
Syringomyelia 2 0 2
Tardive Dyskinesia (TD) 1 0 1
Tarlov Cysts 2 0 2
Temporomandibular joint (TMJ) 6 1 7
Tendonitis 33 0 33
Thalassemia 4 1 5
Throat Cancer 1 0 1
Thrombocytopenia (TCP) 2 0 2
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 11 3 14
Thyroid Eye Disease (TED) 2 0 2
Thyroid Nodule 11 0 11
Tics 1 1 2
Tourette Syndrome (TS) 2 1 3
Tracheobronchomalacia (TBM) 0 2 2
Transient Global Amnesia (TGA) 0 2 2
Traumatic Brain Injury (TBI) 0 1 1
Trichotillomania (TTM) 1 0 1
Trigger Finger (Stenosing Tenosynovitis) 2 0 2
Tuberculosis 1 0 1
Ulcerative Colitis (UC) 17 2 19
Urinary Tract Infection (UTI) 6 4 10
Urticaria (Hives) 9 0 9
Usher Syndrome 2 0 2
Uterine Cancer 7 0 7
Uterine Fibroids 5 0 5
Uterine Polyps 1 0 1
Uveitis 1 0 1
Vaginismus 1 0 1
Varicose Veins 15 2 17
Vasculitis 3 0 3
Velopharyngeal Insufficiency (VPI) 1 0 1
Vertigo 16 4 20
Vision Impairment 61 28 89
Vitamin B12 Deficiency 3 0 3
Vitamin D Deficiency 11 0 11
Vitiligo 5 1 6
Vocal Cord Dysfunction (VCD) 2 0 2
Von Willebrand Disease (VWD) 3 0 3
Wheelchair 7 27 34
Wilson's Disease (hepatolenticular degeneration) 1 0 1
Wolff-Parkinson-White (WPW) Syndrome 1 2 3

For each type of cancer, patients are identified by stage of cancer, stage of treatment, age, and geographical location.

Clients continue to tell us how impressed they are with the high quality of our respondents. This is a result of:

  • Source – we recruit patients personally at advocacy events and other patient events. We partner with online advocacy and support groups.
  • Vetting – We vet each patient and caregiver who signs up both manually (looking at the answers to questions about the condition and treatment) and technologically (does their contact information match independent sources? are IP addresses unique?). If unsure, we contact the patient directly and discuss. Amazing how fraudulent entries will simply go away.

These practices set our respondents apart from those screened across the general population (“please check all the conditions you have”). It takes more time and attention, but we feel the highest quality data is certainly worth it.

With more than 40 years in market research experience on both the client and supplier side, we are happy to give you advice on the design of your research. And since we know our panelist very well, we can advise you on the best way to work with them to get the insights you and your clients require.

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