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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
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • 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
  • Referral Program
  • 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

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.

United States Canada UK Germany France Italy Spain
United States
Disease/Condition Patients Caregivers Total
ABCD Syndrome 3 2 5
Achalasia 39 5 44
Acne 308 16 324
Acoustic Neuroma (Vestibula Schwannoma) 19 5 24
Acromegaly 26 5 31
Adams-Oliver Syndrome (AOS) 1 3 4
Addiction 565 74 639
Addison's Disease (Adrenal insufficiency) 240 65 305
Adenomyosis 77 1 78
Adhesive Capsulitis (Frozen Shoulder) 28 6 34
Adrenal Cortical Carcinoma (ACC) 7 3 10
Agenesis of the Corpus Callosum (ACC) 9 32 41
Aicardi Syndrome 1 11 12
Alagille Syndrome (AS) 3 7 10
Albinism 20 19 39
Alkaptonuria 4 1 5
Allergies 1714 459 2173
Alopecia 140 24 164
Alpha 1 Antitrypsin Deficiency (A1AD) 119 18 137
Alternating Hemiplegia of Childhood (AHC) 0 3 3
Alzheimer's Disease (AD) 115 1439 1554
Amniotic Band Syndrome 2 0 2
Amplified Musculoskeletal Pain Syndrome 39 7 46
Amputation 104 65 169
Amyloidosis 25 5 30
Amyotrophic Lateral Sclerosis (ALS) 125 135 260
Anal Cancer 87 4 91
Anemia 1410 114 1524
Aneurysm 53 17 70
Anhidrosis (Hypohydrosis) 3 3 6
Ankylosing Spondylitis (AS) 534 43 577
Anosmia (loss of smell) 10 0 10
Anoxic Brain Injury 7 19 26
Antiphospholipid Syndrome (APS) 141 8 149
Antisynthetase Syndrome 4 0 4
Anxiety 7998 824 8822
Aortic Disease 106 35 141
Aphantasia 5 0 5
Aphasia 20 22 42
Aplastic Anemia (AA) 115 67 182
Appendix Cancer 15 0 15
Apraxia 7 65 72
Arachnoid Cyst 18 8 26
Arachnoiditis 31 3 34
Arteriovenous Malformation (AVM) 29 12 41
Arthrogryposis Multiplex Congenita (AMC) 26 40 66
Aspirin-like defect (ALD) 1 1 2
Asthma 4049 857 4906
Ataxia 130 80 210
Atrial Fibrillation (AFIB) 383 96 479
Atrophic Vaginitis 10 1 11
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 2597 1116 3713
Atypical Hemolytic Uremic Syndrome (aHUS) 94 30 124
Auditory Processing Disorder (APD) 49 27 76
Autism 718 1654 2372
Autoimmune Disease 356 51 407
Autoimmune Encephalitis (AE) 19 7 26
Avascular Necrosis (AVN, Osteonecrosis) 219 28 247
Barrett's Esophagus 103 11 114
Barth Syndrome (BTHS) 4 9 13
Bartonella 32 4 36
Basal Cell Carcinoma (BCC) 48 5 53
Batten Disease 2 23 25
Beckwith-Wiedemann Syndrome (BWS) 2 4 6
Behcet's Disease (BD) 70 10 80
Bell's Palsy 26 8 34
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 46 13 59
Beta Thalassemia (Cooley s Anemia) 51 12 63
Bile Acid Malabsorption (BAD) 10 0 10
Bile Duct Cancer (Cholangiocarcinoma) 14 7 21
Bipolar 2279 424 2703
Bladder Cancer 58 21 79
Blood Cancer 44 10 54
Blood Clot 153 24 177
Blood Clotting Disorder 121 21 142
Blount's Disease 1 1 2
Bone Cancer 62 19 81
Borderline Personality Disorder (BPD) 571 33 604
Brain Aneurysm 70 16 86
Brain Cancer 74 55 129
Brain Damage 42 68 110
Brain Tumor 122 75 197
BRCA Mutation 30 0 30
Breast Cancer (BC) 1230 125 1355
Breast Cancer in Men 9 1 10
Breast Implant Illness 4 0 4
Bronchiectasis 77 10 87
Bronchitis 151 12 163
Bronchopulmonary Dysplasia (BPD) 1 7 8
Bulging Disc 195 10 205
Bursitis 120 6 126
Calcinosis 8 1 9
Calciphylaxis 2 2 4
Campomelic Dysplasia 0 2 2
Cancer 4245 1432 5677
Candidiasis (Yeast Infection) 58 2 60
Capillary Lymphatic Venous Malformations (CLVMs) 0 2 2
Carcinoid Cancer 13 0 13
Carcinoma 38 2 40
Cardiofaciocutaneous Syndrome (CFC syndrome) 3 7 10
Carnitine Deficiency 9 10 19
Caroli Disease 2 6 8
Carpal Tunnel Syndrome (CTS) 432 18 450
Castleman Disease (CD) 6 2 8
Cauda Equina Syndrome 5 1 6
Celiac Disease (CCD) 642 152 794
Cellulitis 21 7 28
Central Pain Syndrome (CPS) 21 0 21
Cerebellar Atrophy 2 2 4
Cerebral Amyloid Angiopathy 1 4 5
Cerebral Cavernous Malformations (CCMs) 5 2 7
Cerebral Palsy (CP) 217 627 844
Cervical Cancer 91 11 102
Cervical Dystonia 55 5 60
Charge Syndrome 3 8 11
Chiari Malformation (CM) 366 112 478
Chilblains (Pernio) 7 0 7
Chronic Fatigue Syndrome (CFS, ME) 900 29 929
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 164 21 185
Chronic Intestinal Pseudo-obstruction (CIPO) 29 10 39
Chronic obstructive pulmonary disease (COPD) 1124 526 1650
Chronic Pain 2619 232 2851
Chronic Venous Insufficiency (CVI) 54 21 75
Cleft 16 33 49
Clostridium difficile (C Diff) 65 10 75
Clubfoot 20 25 45
Cluster Headache 251 33 284
Coffin-Lowry Syndrome (CLS) 0 1 1
Cognitive Impairment (CI) 71 52 123
Colon Cancer (CRC) 115 40 155
Colon Polyps 33 2 35
Colonic Inertia 22 2 24
Color Blind 5 2 7
Colorectal Cancer (CRC) 80 9 89
Complex Regional Pain Syndrome (CRPS, RSD) 344 32 376
Congenital Adrenal Hyperplasia (CAH) 13 13 26
Congenital Central Hypoventilation Syndrome (CCHS) 2 5 7
Congenital Myopathy 16 9 25
Congenital Sucrase-Isomaltase Deficiency (CSID) 8 12 20
Constipation 298 83 381
Conversion Disorder (CD) 26 2 28
Coronavirus (COVID-19) 339 31 370
Cortical Dysplasia 1 8 9
Costochondritis 76 4 80
Cowden Syndrome (CS) 5 5 10
Craniocervical Instability (CCI) 76 3 79
Craniosynostosis 5 24 29
Crohn's Disease (CD) 1696 267 1963
Cushing's Disease (CS) 211 13 224
Cyclic Vomiting Syndrome (CVS) 256 99 355
Cystic Fibrosis (CF) 783 981 1764
Cystic Hygroma 0 2 2
Cystinosis 3 2 5
Cytomegalovirus (CMV) 20 10 30
Dandy Walker Syndrome (DWS) 6 21 27
Danon Disease 1 0 1
Darier Disease (DD Keratosis Follicularis) 5 1 6
Deep Vein Thrombosis (DVT) 144 17 161
Degenerative Disc Disease (DDD) 1151 89 1240
Deletion Duplication Syndrome 34 285 319
Delta-Storage Pool Deficiency 4 4 8
Depression (MDD) 8157 734 8891
Dercum's Disease (adiposis dolorosa) 25 1 26
Dermatomyositis (DM) 101 12 113
Desmoid Tumor 27 3 30
Developmental Delay (DD) 52 386 438
Diabetes (DM) 5388 2371 7759
Disabled 40 38 78
Disruptive Mood Dysregulation Disorder (DMDD) 16 20 36
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 113 4 117
Diverticulitis 212 20 232
Down Syndrome (DS) 9 167 176
Dry Mouth 33 2 35
Duodenitis 11 1 12
Dupuytren's Contracture 24 3 27
Dwarfism 31 66 97
Dysarthria (Slurred Speech) 12 9 21
Dysautonomia 1706 146 1852
Dyskeratosis Congenita 1 2 3
Dyslexia 68 31 99
Dysmenorrhea (Painful Menstruation) 104 5 109
Dysphagia (Difficulty Swallowing) 126 56 182
Dystonia 106 41 147
Ear Cancer 3 0 3
Eating Disorder 403 37 440
Eczema (Atopic Dermatitis) 921 151 1072
Edema 89 21 110
Ehlers-Danlos Syndrome (EDS) 1767 190 1957
Elephantiasis (Lymphatic Filariasis) 4 2 6
Empty Sella Syndrome (ESS) 23 0 23
Encephalitis 14 12 26
Encephalocele 0 3 3
Endometrial Cancer 55 9 64
Endometriosis 1105 35 1140
Enlarged Spleen (Splenomegaly) 16 2 18
Eosinophilic Colitis (EC) 18 7 25
Eosinophilic Esophagitis (EOE) 310 274 584
Eosinophilic Gasteroenteritis (EG) 41 19 60
Epicondylitis (Tennis Elbow) 15 0 15
Epidermolysis Bullosa (EB) 9 6 15
Epilepsy 1325 2264 3589
Epithelial Basement Membrane Dystrophy 6 0 6
Epstein Barr Syndrome (EBV) 125 5 130
Erb's Palsy 3 3 6
Erectile Dysfunction (ED) 63 9 72
Erythema Nodosum 9 0 9
Erythromelalgia 29 2 31
Esophageal Atresia (EA) 4 16 20
Esophageal Cancer 15 10 25
Esophageal Varices 4 2 6
Essential Thrombocythemia 24 3 27
Essential Tremor 125 19 144
Ewing's Sarcoma 21 4 25
Exocrine Pancreatic Insufficiency (EPI) 61 7 68
Eye Cancer 12 6 18
Fabry disease 239 43 282
Failure to Thrive (FTT) 15 49 64
Familial Adenomatous Polyposis (FAP) 54 9 63
Familial Hypercholesterolemia (FH) 33 9 42
Familial Mediterranean Fever (FMF) 9 6 15
Fatty Oxidation Disorder (FAOD) 30 73 103
Feeding Tubes 248 251 499
Fetal Alcohol Syndrome (FAS) 5 27 32
Fibrocystic Breasts 64 4 68
Fibrodysplasia Ossificans Progressiva (FOP) 10 6 16
Fibromuscular Dysplasia (FMD) 21 3 24
Fibromyalgia (FM) 3656 210 3866
Fibrosing Mediastinitis 6 0 6
Fibrous Dysplasia 18 3 21
Fistula 50 10 60
Foot Drop 59 8 67
FOXG1 Syndrome 1 32 33
Fragile X Syndrome (FXS) 21 64 85
Friedreich's Ataxia (FA) 25 19 44
Functional Neurological Disorder (FND) 83 10 93
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 11 3 14
Galactosemia 0 5 5
Gall Stones 77 6 83
Ganglioneuroblastoma 1 3 4
Gastric Bypass 69 4 73
Gastric Dysmotility 184 16 200
Gastritis 287 23 310
Gastroesophageal Reflux Disease (GERD) 2104 292 2396
Gastrointestinal Stromal Tumor (GIST) 22 6 28
Gastroparesis (GP) 1113 124 1237
Gastroschisis 11 8 19
Gaucher Disease (GD) 77 36 113
Gender Dysphoria 96 1 97
Giant Cell Arteritis (GCA) 9 2 11
Glucose Transporter Deficiency (GLUT1DS) 1 3 4
Gluten Intolerance 87 9 96
Glycogen Storage Disease (GSD) 13 10 23
Goiter 36 2 38
Goldenhar Syndrome 4 5 9
Gout 186 51 237
Graft Versus Host Disease (GVHD) 51 10 61
Granular Cell Tumors 2 0 2
Granuloma Annulare (GA) 18 1 19
Grave's Disease (GD) 299 25 324
Guillain-Barre Syndrome (GBS) 82 8 90
Hansen's Disease (Leprosy) 2 0 2
Hashimoto's Disease (HT) 1294 63 1357
Head and Neck Cancer 22 4 26
Headache 392 26 418
Hearing Aid 168 137 305
Hearing Loss 467 257 724
Heart Disease 2044 1155 3199
HELLP Syndrome 3 0 3
Hemangioma 16 7 23
Hemihyperplasia 3 5 8
Hemochromatosis (Iron Overload) 106 17 123
Hemophilia 934 1027 1961
Hemorrhoids 85 3 88
Hepatitis 445 91 536
Hereditary alpha-tryptasemia (H?T) 15 3 18
Hereditary Angioedema (HAE) 71 12 83
Hereditary hemorrhagic telangiectasia (HHT) 18 6 24
Hereditary Spastic Paraparesis (HSP) 55 9 64
Hereditary Spastic Paraplegia (HSP) 36 16 52
Hernia 285 37 322
Herpes (HSV) 226 10 236
Hidradenitis Suppurativa (HS) 590 17 607
High Blood Pressure (Hypertension, HBP) 4563 951 5514
High Cholesterol (Hyperlipidemia) 1885 307 2192
Hip Dysplasia 81 41 122
Hip Replacement 95 26 121
Hirschsprung's Disease (HD, HSCR) 10 44 54
Hirsutism 20 0 20
HIV 961 112 1073
Hodgkins Lymphoma 118 7 125
Holoprosencephaly (HPE) 1 10 11
Homocystinuria (HCU) 6 7 13
Horner Syndrome 7 4 11
Human Growth Hormone Deficiency (GHD) 148 202 350
Human Papillomavirus (Human Papillomavirus (HPV) 117 3 120
Huntington's Disease (HD) 203 338 541
Hydrocephalus 140 193 333
Hyper-IgA Syndrome 1 1 2
Hyperaldosteronism 8 0 8
Hyperemesis Gravidarum (HG, Morning Sickness) 10 2 12
Hypereosinophilic Syndrome (HES) 15 4 19
Hyperhidrosis 99 1 100
Hyperkalemia 18 4 22
Hypermobility Syndrome 282 26 308
Hyperoxaluria 2 1 3
Hyperparathyroidism 134 13 147
Hypersomnia 176 2 178
Hyperthyroidism 221 16 237
Hypocalcemia 22 3 25
Hypoglycemia (Low Blood Sugar) 312 41 353
Hypohidrotic Ectodermal Dysplasia (HED) 3 8 11
Hypokalemia 89 6 95
Hypokalemic Periodic Paralysis 32 10 42
Hyponatremia 12 0 12
Hypoparathyroidism 144 19 163
Hypophosphatasia (HPP) 16 2 18
Hypoplasia of the Corpus Callosum 3 5 8
Hypothyroidism 2639 206 2845
Hypotonia 22 140 162
Hypoxic Ischemic Encephalopathy (HIE) 7 41 48
Hysterectomy 142 5 147
Ichthyosis 10 4 14
Immune Thrombocytopenic Purpura (ITP) 145 18 163
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 15 3 18
Incontinence 213 65 278
Incontinentia Pigmenti (IP) 6 24 30
Infertility 103 3 106
Insomnia 1017 70 1087
Intellectual Disability 36 170 206
Intermittent Explosive Disorder (IED) 9 9 18
Interstitial Cystitis (IC) 354 15 369
Interstitial Lung Disease (ILD) 128 22 150
Intracranial Hemorrhage (Brain Bleeds) 10 7 17
Intracranial Hypertension (IH, Pseudotumor Cerebri) 254 23 277
intracranial Pressure (ICP) 7 1 8
Iritis 26 1 27
Irritable Bowel Syndrome (IBS) 1872 106 1978
Ischemic Colitis 7 0 7
Jansen's Metaphyseal Chondrodysplasia 2 1 3
Juvenile Arthritis (JA) 173 178 351
Kabuki Syndrome 0 5 5
Kaposi Sarcoma (KS) 4 1 5
Kawasaki Disease 3 4 7
Keratosis Pilaris (follicular keratosis) 38 3 41
Kidney Disease 1450 529 1979
Klinefelter Syndrome (XXY Syndrome) 2 2 4
Klippel-Feil Syndrome (KFS) 10 8 18
Klippel-Trenaunay Syndrome (KTS) 7 3 10
Knee Replacement 96 20 116
Lactose Intolerance 107 13 120
Lamb-Shaffer Syndrome 0 1 1
Lambert-Eaton myasthenic syndrome (LEMS) 23 2 25
Landau Kleffner Syndrome (LKS) 1 5 6
Langerhans Cell Histiocytosis (LCH) 9 8 17
Larsen syndrome 3 2 5
Laryngeal Cancer 2 2 4
Laryngomalacia 3 23 26
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 1 4 5
Learning Disability 65 82 147
Legg-Calve-Perthes Disease (LCPD) 10 10 20
Leiomyosarcoma 12 0 12
LEOPARD Syndrome 4 1 5
Leukemia 288 103 391
Leukocytosis 16 1 17
Leukodystrophy 17 25 42
Leukopenia 11 2 13
Lichen Planus 41 0 41
Lichen Sclerosis (LS) 74 4 78
Lipedema 44 4 48
Lipodystrophy 8 1 9
Liposarcoma 17 0 17
Lissencephaly 0 29 29
Livedo Reticularis (LR) 17 1 18
Liver Cancer 41 27 68
Liver Disease (not hepatitis) 621 160 781
Loeys Dietz Syndrome 3 5 8
Loin Pain Hematuria Syndrome (LPHS) 12 0 12
Loss of Mobility 48 42 90
Low Blood Pressure (Hypotension) 330 21 351
Low Testosterone 58 3 61
Lung Cancer 340 143 483
Lung Disease 233 138 371
Lupus 2828 243 3071
Lyme Disease 328 30 358
Lymphedema 222 26 248
Lymphocytic Colitis 24 3 27
Lymphoma 64 16 80
Lymphoproliferative Disease (LPD) 7 6 13
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 22 2 24
Macular Degeneration 148 42 190
Mal de debarquement Syndrome (MdDS) 6 0 6
Malabsorption 42 3 45
Malignant Hyperthermia (MH) 8 2 10
Maple Syrup Urine Disease (MSUD) 7 11 18
Marfan Syndrome (MFS) 35 14 49
Mastocytosis (Mast Cell Activating Disease, MCAD) 651 66 717
May Thurner Syndrome 36 1 37
Mayer-Rokitansky-K ster-Hauser (MRKH) syndrome 9 0 9
McCune-Albright Syndrome (MAS) 10 2 12
Median arcuate ligament syndrome (MALS) 95 3 98
Memory Loss 107 64 171
Meniere's Disease (MD) 112 10 122
Menopause 109 5 114
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 75 5 80
Mental Illness 160 75 235
Mesothelioma 2 4 6
Metabolic Syndrome 51 14 65
Metatarsalgia 5 0 5
Methicillin-Resistant Staphylococcus Aureus (MRSA) 42 6 48
Microcephaly 3 70 73
Microscopic Colitis 21 0 21
Microtia 6 33 39
Migraine 3818 228 4046
Mitochondrial Disease 120 103 223
Mixed Connective Tissue Disease (MCTD) 262 9 271
Moebius Syndrome 3 5 8
Monoclonal gammopathy of undetermined significance (MGUS) 29 2 31
Mood Disorder 127 42 169
Morgellons Disease (MD) 9 2 11
Moyamoya Disease 12 10 22
MTHFR 129 14 143
Mucopolysaccharidoses (MPS) 10 49 59
Multiple Endocrine Neoplasia (MEN) 12 4 16
Multiple Myeloma (MM) 206 50 256
Multiple Sclerosis (MS) 5699 634 6333
Multiple System Atrophy (MSA) 11 12 23
Muscle Spasms 96 12 108
Muscle Tension Dysphonia (MTD) 11 0 11
Muscular Dystrophy (MD) 388 554 942
Myasthenia Gravis (MG) 725 103 828
Mycobacterium Avium Complex (MAC) 6 1 7
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 32 7 39
Myelodysplastic syndrome (MDS) 124 44 168
Myelofibrosis 42 4 46
Myeloproliferative Neoplasms 11 1 12
Myopathy 68 18 86
Myositis 55 8 63
Narcolepsy 781 45 826
Nasal Polyps 123 10 133
Neck Cancer 7 2 9
Neck Surgery 19 5 24
Neuralgia 273 12 285
Neuroblastoma 2 24 26
Neuroendocrine Cancer (NET) 48 1 49
Neurofibromatosis (NF) 84 32 116
Neurogenic Bladder 197 48 245
Neurogenic Bowel 26 8 34
Neuromyelitis optica (NMO) 309 43 352
Neuropathy 1501 181 1682
Neutropenia 36 43 79
Niemann-Pick Disease 7 8 15
Non-Hodgkin's Lymphoma (NHL) 201 22 223
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 43 2 45
Nonspecific Interstitial Pneumonia (NSIP) 8 0 8
Nontuberculous Mycobacterial (NTM) 3 2 5
Noonan Syndrome (NS) 4 6 10
Obesity 1110 87 1197
Obsessive Compulsive Disorder (OCD) 815 140 955
Oppositional Defiant Disorder (ODD) 50 138 188
Oral Cancer 8 4 12
Organ Transplant 311 105 416
Organic Acidemia (OA) 6 51 57
Osteoarthritis (OA) 2466 319 2785
Osteogenesis Imperfecta (OI) 67 47 114
Osteomyelitis (OM) 26 8 34
Osteopenia 272 30 302
Osteoporosis 632 89 721
Ostomy 299 83 382
Ovarian Cancer 221 22 243
Ovarian Cyst 195 8 203
Overactive Bladder (OAB) 204 17 221
Paget's 6 0 6
Palmoplantar Pustulosis 4 0 4
Pancreatic Cancer 28 28 56
Pancreatitis 160 26 186
Paraganglioma 6 2 8
Paralysis 194 171 365
Paraneoplastic Syndrome 7 4 11
Parkinson's Disease (PD) 525 463 988
Paroxysmal Nocturnal Hemoglobinuria (PNH) 156 39 195
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 28 29 57
Pelvic Congestion Syndrome (PCS) 30 3 33
Pelvic Floor Dysfunction 146 8 154
Pelvic Inflammatory Disease (PID) 15 1 16
Pemphigus / Pemphigoid 218 27 245
Pendred Syndrome 1 1 2
Periodic Limb Movement Disorder (PLMD) 31 4 35
Periodontitis (Gum Disease) 45 0 45
Perivascular Epithelioid Cell Tumour (PEComas) 2 0 2
Periventricular Leukomalacia (PVL) 2 17 19
Persistent Genital Arousal Disorder 4 0 4
Personality Disorder 43 6 49
Peyronie's Disease (Penile Fibrosis) 11 1 12
Pfeiffer Syndrome 0 4 4
Phenylketonuria (PKU) 49 66 115
Pheochromocytoma (PCC) 22 1 23
Pierre Robin Sequence (PRS) 4 20 24
Pituitary Tumor 117 12 129
Plagiocephaly (Flat Head Syndrome) 1 5 6
Plantar Fasciitis (PF) 183 5 188
Pneumonia 81 18 99
Poland Syndrome 4 3 7
Polio 11 10 21
Polychrondritis 51 3 54
Polycystic Ovarian Syndrome (PCOS) 1314 53 1367
Polycythemia Vera (PV) 117 3 120
Polymicrogyria (PMG) 0 26 26
Polymyalgia Rheumatica (PMR) 29 3 32
Polymyositis (PM) 54 3 57
Pompe Disease 26 33 59
Popliteal Artery Entrapment Syndrome (PAES) 0 1 1
Porphyria 26 6 32
Post-Polio Syndrome (PPS) 24 5 29
Posttraumatic Stress Disorder (PTSD) 3018 275 3293
Pre-exposure Prophylaxis (PrEP) 44 4 48
Precocious Puberty 1 11 12
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 16 0 16
Premenstrual Dysphoric Disorder (PMDD) 168 3 171
Primary Ciliary Dyskinesia (PCD) 7 10 17
Primary Hyperoxaluria (PH) 6 10 16
Primary Immunodeficiency (PID) 443 113 556
Primary Peritoneal 4 0 4
Progressive Multifocal Leukoencephalopathy (PML) 4 2 6
Progressive Supranuclear Palsy (PSP) 14 10 24
Prolactinoma 16 0 16
Prostate Cancer 105 64 169
Protein Deficiency 17 5 22
Proteinuria (Protein in Urine) 13 2 15
Prurigo Nodularis (PN) 18 1 19
Pseudobulbar Affect (PBA) 15 3 18
Psoriasis 1009 86 1095
Psoriatic Arthritis (PsA) 563 57 620
Ptosis (Drooping eye, Blepharoptosis) 16 5 21
Pulmonary Arterial Hypertension (PAH) 986 244 1230
Pulmonary Embolism (PE) 136 16 152
Pulmonary Fibrosis (PF) 149 43 192
Pyloric Stenosis (Gastric Outlet Obstruction) 16 8 24
Pyoderma Gangrenosum (PG) 19 0 19
Pyruvate Kinase Deficiency (PKD) 5 2 7
Raynaud's Syndrome 852 41 893
Rectal Cancer (CRC) 29 7 36
Rectocele 14 0 14
Renal Cell Carcinoma (Kidney Cancer, RCC) 93 24 117
Respiratory Syncytial Virus (RSV) Infection 2 3 5
Restless Leg Syndrome (RLS) 512 36 548
Retroperitoneal Fibrosis 3 3 6
Rheumatoid Arthritis (RA) 2222 300 2522
Rickets (Osteomalacia) 5 2 7
Rocky Mountain Spotted Fever (RMSF) 7 1 8
Rosacea 138 4 142
Rubella- German Measles 2 0 2
Sacroiliac Joint Disease (SI) 58 3 61
Sarcoidosis 229 21 250
Sarcoma 77 12 89
Schamberg's Disease 4 0 4
Scheuermann's Kyphosis 25 10 35
Schinzel-Giedion Syndrome (SGS) 0 3 3
Schizencephaly 1 24 25
Schizophrenia 323 220 543
Sciatica 320 19 339
Scleroderma 335 38 373
Sclerosing Peritonitis (SP) 3 0 3
Scoliosis 781 165 946
Secondary Adrenal insufficiency 121 18 139
Sensory Processing Disorder (SPD) 117 233 350
Sepsis 35 7 42
Sexually Transmitted Disease 17 0 17
Shaken Baby Syndrome (SBS) 2 11 13
Shingles (Herpes Zoster) 93 11 104
Short Bowel Syndrome (SBS, Short Gut) 96 40 136
Shoulder Replacement 8 0 8
Sickle Cell Disease (SCD) 1005 457 1462
Sickle Cell Disease (SCD): Sickle Cell Trait 66 22 88
Sinusitis 267 27 294
Sjogren's Syndrome (SjS, SS) 891 38 929
Skin Cancer 61 22 83
Skin Cancer- Melanoma 156 27 183
Sleep Apnea (OSA) 1411 234 1645
Sleep Disorder 248 50 298
Small for Gestational Age SGA) 3 1 4
Small Intestinal Bacterial Overgrowth (SIBO) 112 8 120
Smith-Lemli-Opitz Syndrome (SLOS) 1 6 7
Sotos Syndrome 1 7 8
Spasmodic Dysphonia 14 0 14
Spastic Diplegia 8 8 16
Spasticity 50 32 82
Speech Impairment 44 88 132
Spherocytosis 12 8 20
Sphincter of Oddi Dysfunction 15 3 18
Spina Bifida (SB) 133 131 264
Spinal Cancer 6 2 8
Spinal Cord 966 194 1160
Spinal Muscular Atrophy (SMA) 238 442 680
Sprengel Deformity 3 2 5
Squamous Cell Carcinoma (SCC) 83 8 91
Stickler Syndrome 16 13 29
Stiff Person Syndrome (SPS) 25 2 27
Stomach Cancer 25 15 40
Stomach Ulcer 152 24 176
Stroke 402 431 833
Subcortical Band Heterotopia 0 3 3
Subglottic Stenosis (SGS) 14 9 23
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 73 4 77
Syncope 163 8 171
Synesthesia 7 1 8
Syringomyelia 85 14 99
Tardive Dyskinesia (TD) 68 5 73
Tarlov Cysts 26 0 26
Tay Sachs (TSD) 10 19 29
Temporomandibular joint (TMJ) 341 10 351
Tendonitis 147 7 154
Testicular Cancer 11 3 14
Thalassemia 57 6 63
Thoracic Outlet Syndrome (TOS) 71 3 74
Throat Cancer 14 7 21
Thrombocytopenia (TCP) 40 6 46
Thrombotic Thrombocytopenic Purpura (TTP) 11 1 12
Thyroid Cancer 333 15 348
Thyroid Eye Disease (TED) 84 3 87
Thyroid Nodule 146 5 151
Thyroidectomy 105 5 110
Tics 18 6 24
Tongue Cancer 5 1 6
Tooth Agenesis (Anodontia) 5 0 5
Torticollis (Wry Neck) 7 4 11
Tourette Syndrome (TS) 85 68 153
Townes-Brocks Syndrome 0 1 1
Toxic Synovitis 1 0 1
Tracheobronchomalacia (TBM) 6 4 10
Tracheomalacia 5 14 19
Transient Global Amnesia (TGA) 4 7 11
Traumatic Brain Injury (TBI) 283 155 438
Treacher Collins syndrome (TCS) 2 4 6
Trichotillomania (TTM) 64 6 70
Trigger Finger (Stenosing Tenosynovitis) 19 4 23
Trisomy 13 (Patau Syndrome) 1 5 6
Trisomy 18 (Edwards Syndrome) 1 7 8
Trisomy X (XXX) 12 11 23
Tuberculosis 15 6 21
Ulcerative Colitis (UC) 923 122 1045
Undifferentiated Connective Tissue Disease (UCTD) 95 7 102
Urea Cycle Disorder (UCD) 27 12 39
Urethral Prolapse 8 1 9
Urinary Tract Infection (UTI) 367 34 401
Urticaria (Hives) 321 30 351
Usher Syndrome 8 6 14
Uterine Cancer 44 10 54
Uterine Fibroids 256 4 260
Uterine Leiomyosarcoma 6 1 7
Uterine Polyps 14 2 16
Uveitis 70 16 86
VACTERL Syndrome 1 6 7
Vaginismus 19 2 21
Valosin Containing Protein (VCP) 10 1 11
Varicose Veins 58 2 60
Vasculitis 90 15 105
Velopharyngeal Insufficiency (VPI) 1 1 2
Vertebral Artery Dissection (VAD) 13 1 14
Vertigo 246 34 280
Vision Impairment 1154 480 1634
Vitamin B12 Deficiency 138 11 149
Vitamin D Deficiency 308 25 333
Vitiligo 94 13 107
Vocal Cord Dysfunction (VCD) 57 16 73
Von Hippel-Lindau Syndrome 4 3 7
Von Willebrand Disease (VWD) 318 162 480
Vulvar Cancer 12 2 14
Vulvodynia 21 1 22
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 183 18 201
Wegener's Granulomatosis with Polyangiitis (GPA) 32 5 37
Wheelchair 2141 1776 3917
Williams Syndrome (WS) 8 33 41
Wilson's Disease (hepatolenticular degeneration) 14 21 35
Wolf-Hirschhorn Syndrome (WHS) 0 4 4
Canada
Disease/Condition Patients Caregivers Total
Achalasia 3 0 3
Acne 10 1 11
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 2 0 2
Addiction 19 1 20
Addison's Disease (Adrenal insufficiency) 13 1 14
Adenomyosis 5 0 5
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Agenesis of the Corpus Callosum (ACC) 1 2 3
Albinism 1 1 2
Allergies 85 13 98
Alopecia 17 0 17
Alpha 1 Antitrypsin Deficiency (A1AD) 4 0 4
Alzheimer's Disease (AD) 0 17 17
Amplified Musculoskeletal Pain Syndrome 1 0 1
Amputation 3 0 3
Amyloidosis 1 0 1
Amyotrophic Lateral Sclerosis (ALS) 4 2 6
Anal Cancer 5 0 5
Anemia 53 0 53
Aneurysm 2 1 3
Anhidrosis (Hypohydrosis) 1 0 1
Ankylosing Spondylitis (AS) 40 3 43
Antiphospholipid Syndrome (APS) 9 0 9
Anxiety 369 22 391
Aortic Disease 6 2 8
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 2 0 2
Arthrogryposis Multiplex Congenita (AMC) 4 2 6
Asthma 151 18 169
Ataxia 8 1 9
Atrial Fibrillation (AFIB) 5 2 7
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 142 31 173
Atypical Hemolytic Uremic Syndrome (aHUS) 2 3 5
Auditory Processing Disorder (APD) 4 1 5
Autism 58 40 98
Autoimmune Disease 14 1 15
Avascular Necrosis (AVN, Osteonecrosis) 8 1 9
Barth Syndrome (BTHS) 0 1 1
Basal Cell Carcinoma (BCC) 2 1 3
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 36 5 41
Bladder Cancer 1 0 1
Blood Cancer 2 1 3
Blood Clot 8 0 8
Blood Clotting Disorder 4 1 5
Bone Cancer 6 1 7
Borderline Personality Disorder (BPD) 58 2 60
Brain Aneurysm 5 0 5
Brain Cancer 0 2 2
Brain Damage 6 1 7
Brain Tumor 5 2 7
BRCA Mutation 2 0 2
Breast Cancer (BC) 38 5 43
Bronchiectasis 1 0 1
Bronchitis 4 0 4
Bulging Disc 8 1 9
Bursitis 10 0 10
Cancer 119 26 145
Candidiasis (Yeast Infection) 2 0 2
Carcinoid Cancer 1 0 1
Carcinoma 1 0 1
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 10 0 10
Castleman Disease (CD) 1 0 1
Celiac Disease (CCD) 34 4 38
Cerebral Palsy (CP) 15 9 24
Cervical Cancer 2 0 2
Cervical Dystonia 2 0 2
Charge Syndrome 0 1 1
Chiari Malformation (CM) 5 5 10
Chronic Fatigue Syndrome (CFS, ME) 66 1 67
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 3 1 4
Chronic Intestinal Pseudo-obstruction (CIPO) 3 0 3
Chronic obstructive pulmonary disease (COPD) 37 8 45
Chronic Pain 110 8 118
Chronic Venous Insufficiency (CVI) 3 1 4
Clostridium difficile (C Diff) 3 0 3
Clubfoot 1 1 2
Cluster Headache 12 0 12
Cognitive Impairment (CI) 4 1 5
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) 24 0 24
Congenital Adrenal Hyperplasia (CAH) 2 0 2
Constipation 12 2 14
Conversion Disorder (CD) 1 0 1
Coronavirus (COVID-19) 8 0 8
Cortical Dysplasia 0 1 1
Costochondritis 7 0 7
Cowden Syndrome (CS) 1 0 1
Craniocervical Instability (CCI) 2 0 2
Craniosynostosis 0 4 4
Crohn's Disease (CD) 171 11 182
Cushing's Disease (CS) 14 1 15
Cyclic Vomiting Syndrome (CVS) 24 9 33
Cystic Fibrosis (CF) 62 29 91
Cystic Hygroma 1 0 1
Deep Vein Thrombosis (DVT) 4 0 4
Degenerative Disc Disease (DDD) 47 0 47
Deletion Duplication Syndrome 0 10 10
Depression (MDD) 360 18 378
Dermatomyositis (DM) 3 0 3
Desmoid Tumor 1 0 1
Developmental Delay (DD) 4 12 16
Diabetes (DM) 163 34 197
Disabled 4 0 4
Disruptive Mood Dysregulation Disorder (DMDD) 0 1 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 9 0 9
Diverticulitis 11 1 12
Down Syndrome (DS) 1 5 6
Dry Mouth 1 0 1
Duodenitis 1 0 1
Dupuytren's Contracture 2 0 2
Dwarfism 4 0 4
Dysarthria (Slurred Speech) 1 0 1
Dysautonomia 66 4 70
Dyslexia 4 1 5
Dysmenorrhea (Painful Menstruation) 7 2 9
Dysphagia (Difficulty Swallowing) 6 0 6
Dystonia 5 1 6
Eating Disorder 32 0 32
Eczema (Atopic Dermatitis) 48 3 51
Edema 2 0 2
Ehlers-Danlos Syndrome (EDS) 96 1 97
Encephalitis 3 0 3
Endometrial Cancer 2 0 2
Endometriosis 60 1 61
Eosinophilic Esophagitis (EOE) 9 6 15
Eosinophilic Gasteroenteritis (EG) 2 0 2
Epilepsy 38 57 95
Epstein Barr Syndrome (EBV) 1 0 1
Erectile Dysfunction (ED) 3 0 3
Erythema Nodosum 1 0 1
Erythromelalgia 3 0 3
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 3 3
Familial Adenomatous Polyposis (FAP) 5 0 5
Familial Mediterranean Fever (FMF) 1 0 1
Fatty Oxidation Disorder (FAOD) 0 2 2
Feeding Tubes 4 5 9
Fetal Alcohol Syndrome (FAS) 0 4 4
Fibrocystic Breasts 2 0 2
Fibrodysplasia Ossificans Progressiva (FOP) 1 1 2
Fibromyalgia (FM) 187 1 188
Fibrous Dysplasia 0 1 1
Fistula 4 0 4
Foot Drop 1 0 1
FOXG1 Syndrome 0 2 2
Fragile X Syndrome (FXS) 0 4 4
Friedreich's Ataxia (FA) 1 2 3
Functional Neurological Disorder (FND) 8 0 8
Gall Stones 7 0 7
Gastric Dysmotility 8 0 8
Gastritis 9 0 9
Gastroesophageal Reflux Disease (GERD) 68 4 72
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 40 1 41
Gastroschisis 1 0 1
Gaucher Disease (GD) 1 1 2
Gender Dysphoria 6 0 6
Glucose Transporter Deficiency (GLUT1DS) 0 2 2
Gluten Intolerance 6 0 6
Gout 5 1 6
Graft Versus Host Disease (GVHD) 2 0 2
Granuloma Annulare (GA) 3 0 3
Grave's Disease (GD) 8 0 8
Guillain-Barre Syndrome (GBS) 5 0 5
Hashimoto's Disease (HT) 55 1 56
Headache 19 2 21
Hearing Aid 12 2 14
Hearing Loss 21 3 24
Heart Disease 49 28 77
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 4 1 5
Hemophilia 13 12 25
Hemorrhoids 3 0 3
Hepatitis 19 2 21
Hereditary alpha-tryptasemia (H?T) 1 0 1
Hereditary Angioedema (HAE) 9 1 10
Hereditary Spastic Paraparesis (HSP) 7 0 7
Hereditary Spastic Paraplegia (HSP) 6 0 6
Hernia 6 1 7
Herpes (HSV) 6 0 6
Hidradenitis Suppurativa (HS) 34 1 35
High Blood Pressure (Hypertension, HBP) 113 19 132
High Cholesterol (Hyperlipidemia) 54 3 57
Hip Dysplasia 3 1 4
Hip Replacement 9 0 9
Hirschsprung's Disease (HD, HSCR) 1 5 6
HIV 6 0 6
Hodgkins Lymphoma 10 2 12
Homocystinuria (HCU) 1 0 1
Human Growth Hormone Deficiency (GHD) 8 5 13
Human Papillomavirus (Human Papillomavirus (HPV) 3 0 3
Huntington's Disease (HD) 3 4 7
Hydrocephalus 10 5 15
Hyperhidrosis 4 0 4
Hypermobility Syndrome 19 2 21
Hyperparathyroidism 6 0 6
Hypersomnia 7 1 8
Hyperthyroidism 11 2 13
Hypocalcemia 1 0 1
Hypoglycemia (Low Blood Sugar) 18 2 20
Hypokalemia 1 0 1
Hypoparathyroidism 5 0 5
Hypophosphatasia (HPP) 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 111 1 112
Hypotonia 0 7 7
Hysterectomy 2 0 2
Immune Thrombocytopenic Purpura (ITP) 7 1 8
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 10 5 15
Infertility 7 0 7
Insomnia 38 1 39
Intellectual Disability 2 13 15
Interstitial Cystitis (IC) 12 0 12
Interstitial Lung Disease (ILD) 5 0 5
Intracranial Hemorrhage (Brain Bleeds) 1 0 1
Intracranial Hypertension (IH, Pseudotumor Cerebri) 2 1 3
intracranial Pressure (ICP) 1 0 1
Iritis 3 0 3
Irritable Bowel Syndrome (IBS) 123 2 125
Juvenile Arthritis (JA) 11 11 22
Kawasaki Disease 1 1 2
Keratosis Pilaris (follicular keratosis) 2 0 2
Kidney Disease 52 7 59
Klippel-Feil Syndrome (KFS) 2 0 2
Knee Replacement 7 1 8
Lactose Intolerance 10 0 10
Learning Disability 12 9 21
Legg-Calve-Perthes Disease (LCPD) 1 1 2
Leiomyosarcoma 1 0 1
LEOPARD Syndrome 1 1 2
Leukemia 11 2 13
Leukodystrophy 2 2 4
Lichen Planus 1 0 1
Lichen Sclerosis (LS) 4 0 4
Lipedema 2 0 2
Liposarcoma 2 0 2
Livedo Reticularis (LR) 1 0 1
Liver Cancer 4 0 4
Liver Disease (not hepatitis) 39 2 41
Loss of Mobility 7 5 12
Low Blood Pressure (Hypotension) 14 1 15
Low Testosterone 1 0 1
Lung Cancer 10 4 14
Lung Disease 8 1 9
Lupus 129 2 131
Lyme Disease 8 0 8
Lymphedema 9 0 9
Lymphoma 7 0 7
Macular Degeneration 3 2 5
Mal de debarquement Syndrome (MdDS) 1 0 1
Marfan Syndrome (MFS) 3 1 4
Mastocytosis (Mast Cell Activating Disease, MCAD) 31 1 32
McCune-Albright Syndrome (MAS) 0 1 1
Median arcuate ligament syndrome (MALS) 2 0 2
Memory Loss 6 5 11
Meniere's Disease (MD) 4 0 4
Menopause 9 0 9
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 7 0 7
Mental Illness 12 3 15
Metabolic Syndrome 3 0 3
Methicillin-Resistant Staphylococcus Aureus (MRSA) 1 0 1
Microscopic Colitis 2 0 2
Microtia 1 1 2
Migraine 131 4 135
Mitochondrial Disease 7 0 7
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) 202 8 210
Multiple System Atrophy (MSA) 1 0 1
Muscle Spasms 6 0 6
Muscle Tension Dysphonia (MTD) 2 0 2
Muscular Dystrophy (MD) 18 6 24
Myasthenia Gravis (MG) 11 0 11
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 5 0 5
Myelodysplastic syndrome (MDS) 4 0 4
Myelofibrosis 0 1 1
Myeloproliferative Neoplasms 0 1 1
Myopathy 1 2 3
Myositis 3 0 3
Narcolepsy 13 1 14
Neuralgia 11 0 11
Neuroblastoma 0 1 1
Neuroendocrine Cancer (NET) 6 1 7
Neurofibromatosis (NF) 5 1 6
Neurogenic Bladder 7 1 8
Neurogenic Bowel 1 0 1
Neuromyelitis optica (NMO) 27 0 27
Neuropathy 36 1 37
Neutropenia 1 2 3
Niemann-Pick Disease 1 0 1
Non-Hodgkin's Lymphoma (NHL) 11 1 12
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 1 0 1
Noonan Syndrome (NS) 0 1 1
Obesity 40 0 40
Obsessive Compulsive Disorder (OCD) 60 4 64
Oppositional Defiant Disorder (ODD) 5 3 8
Organ Transplant 20 1 21
Osteoarthritis (OA) 133 5 138
Osteogenesis Imperfecta (OI) 4 2 6
Osteomyelitis (OM) 1 0 1
Osteopenia 8 1 9
Osteoporosis 32 3 35
Ostomy 1 1 2
Ovarian Cancer 3 0 3
Ovarian Cyst 5 0 5
Overactive Bladder (OAB) 9 0 9
Paget's 1 0 1
Pancreatic Cancer 1 1 2
Pancreatitis 2 1 3
Paralysis 10 1 11
Paraneoplastic Syndrome 1 0 1
Parkinson's Disease (PD) 19 9 28
Paroxysmal Nocturnal Hemoglobinuria (PNH) 4 0 4
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 7 0 7
Pemphigus / Pemphigoid 11 1 12
Periodic Limb Movement Disorder (PLMD) 1 0 1
Periventricular Leukomalacia (PVL) 0 1 1
Personality Disorder 3 1 4
Phenylketonuria (PKU) 4 1 5
Pheochromocytoma (PCC) 1 0 1
Pituitary Tumor 10 0 10
Plantar Fasciitis (PF) 8 0 8
Pneumonia 3 0 3
Polio 2 0 2
Polychrondritis 6 0 6
Polycystic Ovarian Syndrome (PCOS) 70 0 70
Polycythemia Vera (PV) 8 0 8
Polymicrogyria (PMG) 0 2 2
Polymyositis (PM) 5 0 5
Pompe Disease 0 2 2
Porphyria 2 0 2
Post-Polio Syndrome (PPS) 3 0 3
Posttraumatic Stress Disorder (PTSD) 150 7 157
Pre-exposure Prophylaxis (PrEP) 1 0 1
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 1 0 1
Premenstrual Dysphoric Disorder (PMDD) 10 0 10
Primary Immunodeficiency (PID) 10 1 11
Prolactinoma 2 0 2
Prostate Cancer 6 3 9
Protein Deficiency 2 0 2
Psoriasis 65 1 66
Psoriatic Arthritis (PsA) 26 1 27
Ptosis (Drooping eye, Blepharoptosis) 1 1 2
Pulmonary Arterial Hypertension (PAH) 16 3 19
Pulmonary Embolism (PE) 4 0 4
Pulmonary Fibrosis (PF) 5 0 5
Pyoderma Gangrenosum (PG) 3 0 3
Raynaud's Syndrome 52 1 53
Rectal Cancer (CRC) 0 1 1
Rectocele 1 0 1
Renal Cell Carcinoma (Kidney Cancer, RCC) 7 1 8
Restless Leg Syndrome (RLS) 13 1 14
Rheumatoid Arthritis (RA) 110 8 118
Rosacea 12 0 12
Sacroiliac Joint Disease (SI) 4 0 4
Sarcoidosis 6 0 6
Sarcoma 1 0 1
Scheuermann's Kyphosis 1 1 2
Schizophrenia 11 5 16
Sciatica 13 1 14
Scleroderma 18 2 20
Scoliosis 41 7 48
Secondary Adrenal insufficiency 6 0 6
Sensory Processing Disorder (SPD) 10 3 13
Sepsis 0 1 1
Shingles (Herpes Zoster) 4 0 4
Short Bowel Syndrome (SBS, Short Gut) 4 2 6
Sickle Cell Disease (SCD) 10 7 17
Sickle Cell Disease (SCD): Sickle Cell Trait 1 1 2
Sinusitis 10 2 12
Sjogren's Syndrome (SjS, SS) 24 0 24
Skin Cancer 3 0 3
Skin Cancer- Melanoma 10 0 10
Sleep Apnea (OSA) 48 7 55
Sleep Disorder 11 0 11
Small Intestinal Bacterial Overgrowth (SIBO) 5 0 5
Sotos Syndrome 0 1 1
Spastic Diplegia 1 1 2
Spasticity 2 0 2
Speech Impairment 2 1 3
Spherocytosis 1 0 1
Spina Bifida (SB) 4 3 7
Spinal Cord 31 3 34
Spinal Muscular Atrophy (SMA) 19 49 68
Squamous Cell Carcinoma (SCC) 3 0 3
Stiff Person Syndrome (SPS) 2 0 2
Stomach Cancer 1 0 1
Stomach Ulcer 6 0 6
Stroke 11 8 19
Subglottic Stenosis (SGS) 1 0 1
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 2 0 2
Syncope 7 0 7
Syringomyelia 6 0 6
Tardive Dyskinesia (TD) 1 0 1
Tarlov Cysts 3 0 3
Temporomandibular joint (TMJ) 24 0 24
Tendonitis 7 0 7
Thalassemia 6 1 7
Thoracic Outlet Syndrome (TOS) 7 0 7
Thrombocytopenia (TCP) 3 0 3
Thyroid Cancer 12 0 12
Thyroid Eye Disease (TED) 2 0 2
Thyroid Nodule 9 0 9
Thyroidectomy 2 0 2
Torticollis (Wry Neck) 1 1 2
Tourette Syndrome (TS) 10 2 12
Tracheobronchomalacia (TBM) 1 0 1
Tracheomalacia 0 1 1
Transient Global Amnesia (TGA) 1 0 1
Traumatic Brain Injury (TBI) 11 2 13
Trichotillomania (TTM) 5 0 5
Trisomy 13 (Patau Syndrome) 0 1 1
Trisomy 18 (Edwards Syndrome) 0 1 1
Tuberculosis 1 0 1
Ulcerative Colitis (UC) 66 8 74
Undifferentiated Connective Tissue Disease (UCTD) 3 0 3
Urea Cycle Disorder (UCD) 2 0 2
Urinary Tract Infection (UTI) 7 2 9
Urticaria (Hives) 25 1 26
Uterine Fibroids 13 0 13
Uterine Polyps 1 0 1
Uveitis 4 0 4
Vaginismus 2 0 2
Varicose Veins 5 0 5
Vasculitis 3 0 3
Vertigo 7 1 8
Vision Impairment 36 15 51
Vitamin B12 Deficiency 7 0 7
Vitamin D Deficiency 5 0 5
Vitiligo 4 0 4
Vocal Cord Dysfunction (VCD) 2 1 3
Von Willebrand Disease (VWD) 8 1 9
Vulvodynia 3 0 3
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 12 1 13
Wegener's Granulomatosis with Polyangiitis (GPA) 3 0 3
Wheelchair 125 54 179
Wilson's Disease (hepatolenticular degeneration) 1 0 1
UK
Disease/Condition Patients Caregivers Total
Achalasia 5 0 5
Acne 14 4 18
Acoustic Neuroma (Vestibula Schwannoma) 3 0 3
Addiction 21 16 37
Addison's Disease (Adrenal insufficiency) 34 6 40
Adenomyosis 22 0 22
Adhesive Capsulitis (Frozen Shoulder) 5 2 7
Aicardi Syndrome 0 1 1
Albinism 0 1 1
Allergies 162 20 182
Alopecia 17 1 18
Alpha 1 Antitrypsin Deficiency (A1AD) 5 2 7
Alternating Hemiplegia of Childhood (AHC) 1 0 1
Alzheimer's Disease (AD) 8 161 169
Amplified Musculoskeletal Pain Syndrome 6 1 7
Amputation 17 10 27
Amyloidosis 5 3 8
Amyotrophic Lateral Sclerosis (ALS) 1 3 4
Anal Cancer 4 0 4
Anemia 114 10 124
Aneurysm 5 3 8
Ankylosing Spondylitis (AS) 79 9 88
Anosmia (loss of smell) 2 0 2
Anoxic Brain Injury 1 0 1
Antiphospholipid Syndrome (APS) 16 4 20
Antisynthetase Syndrome 1 0 1
Anxiety 885 140 1025
Aortic Disease 23 9 32
Aphasia 1 7 8
Aplastic Anemia (AA) 1 2 3
Apraxia 1 1 2
Arachnoid Cyst 4 0 4
Arachnoiditis 2 0 2
Arteriovenous Malformation (AVM) 3 1 4
Arthrogryposis Multiplex Congenita (AMC) 6 3 9
Aspirin-like defect (ALD) 1 0 1
Asthma 760 88 848
Ataxia 14 9 23
Atrial Fibrillation (AFIB) 48 13 61
Atrophic Vaginitis 2 0 2
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 126 98 224
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 6 7 13
Autism 178 263 441
Autoimmune Disease 43 5 48
Autoimmune Encephalitis (AE) 1 0 1
Avascular Necrosis (AVN, Osteonecrosis) 12 1 13
Barrett's Esophagus 24 4 28
Basal Cell Carcinoma (BCC) 2 1 3
Beckwith-Wiedemann Syndrome (BWS) 0 1 1
Behcet's Disease (BD) 11 0 11
Bell's Palsy 3 0 3
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 12 5 17
Beta Thalassemia (Cooley s Anemia) 3 0 3
Bile Acid Malabsorption (BAD) 20 2 22
Bile Duct Cancer (Cholangiocarcinoma) 1 1 2
Bipolar 118 32 150
Bladder Cancer 12 2 14
Blood Cancer 7 5 12
Blood Clot 23 6 29
Blood Clotting Disorder 10 1 11
Bone Cancer 5 5 10
Borderline Personality Disorder (BPD) 161 26 187
Brain Aneurysm 10 3 13
Brain Cancer 2 5 7
Brain Damage 5 12 17
Brain Tumor 23 7 30
BRCA Mutation 3 0 3
Breast Cancer (BC) 83 17 100
Bronchiectasis 27 1 28
Bronchitis 5 3 8
Bronchopulmonary Dysplasia (BPD) 0 1 1
Bulging Disc 34 1 35
Bursitis 23 1 24
Cancer 178 64 242
Candidiasis (Yeast Infection) 5 0 5
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) 43 5 48
Cauda Equina Syndrome 8 1 9
Celiac Disease (CCD) 41 2 43
Cellulitis 10 2 12
Central Pain Syndrome (CPS) 1 0 1
Cerebellar Atrophy 0 1 1
Cerebral Palsy (CP) 21 43 64
Cervical Cancer 7 2 9
Cervical Dystonia 1 0 1
Chiari Malformation (CM) 21 4 25
Chronic Fatigue Syndrome (CFS, ME) 298 15 313
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 9 3 12
Chronic Intestinal Pseudo-obstruction (CIPO) 5 2 7
Chronic obstructive pulmonary disease (COPD) 306 115 421
Chronic Pain 337 30 367
Chronic Venous Insufficiency (CVI) 0 1 1
Cleft 0 1 1
Clostridium difficile (C Diff) 1 0 1
Cluster Headache 29 3 32
Coffin-Lowry Syndrome (CLS) 0 1 1
Cognitive Impairment (CI) 1 3 4
Colon Cancer (CRC) 16 11 27
Colon Polyps 1 0 1
Colonic Inertia 1 0 1
Color Blind 1 0 1
Colorectal Cancer (CRC) 7 3 10
Complex Regional Pain Syndrome (CRPS, RSD) 39 2 41
Congenital Adrenal Hyperplasia (CAH) 2 1 3
Congenital Central Hypoventilation Syndrome (CCHS) 1 0 1
Congenital Myopathy 2 0 2
Constipation 25 8 33
Conversion Disorder (CD) 2 1 3
Coronavirus (COVID-19) 52 6 58
Cortical Dysplasia 0 1 1
Costochondritis 32 3 35
Cowden Syndrome (CS) 6 0 6
Craniocervical Instability (CCI) 2 0 2
Craniosynostosis 0 3 3
Crohn's Disease (CD) 169 9 178
Cushing's Disease (CS) 13 1 14
Cyclic Vomiting Syndrome (CVS) 12 6 18
Cystic Fibrosis (CF) 4 8 12
Cystinosis 1 1 2
Dandy Walker Syndrome (DWS) 1 1 2
Darier Disease (DD Keratosis Follicularis) 1 0 1
Deep Vein Thrombosis (DVT) 14 4 18
Degenerative Disc Disease (DDD) 115 7 122
Deletion Duplication Syndrome 1 4 5
Delta-Storage Pool Deficiency 1 0 1
Depression (MDD) 1053 133 1186
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 4 1 5
Developmental Delay (DD) 5 39 44
Diabetes (DM) 785 229 1014
Disabled 11 6 17
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 10 6 16
Diverticulitis 93 13 106
Down Syndrome (DS) 0 13 13
Dupuytren's Contracture 9 0 9
Dwarfism 4 1 5
Dysarthria (Slurred Speech) 0 1 1
Dysautonomia 128 4 132
Dyskeratosis Congenita 2 0 2
Dyslexia 34 8 42
Dysmenorrhea (Painful Menstruation) 15 0 15
Dysphagia (Difficulty Swallowing) 11 6 17
Dystonia 11 3 14
Eating Disorder 56 12 68
Eczema (Atopic Dermatitis) 123 10 133
Edema 1 2 3
Ehlers-Danlos Syndrome (EDS) 219 17 236
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 3 0 3
Encephalitis 2 1 3
Endometrial Cancer 7 2 9
Endometriosis 115 5 120
Enlarged Spleen (Splenomegaly) 5 0 5
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 143 142 285
Epstein Barr Syndrome (EBV) 1 0 1
Erectile Dysfunction (ED) 14 0 14
Erythema Nodosum 1 1 2
Erythromelalgia 9 0 9
Esophageal Atresia (EA) 1 0 1
Esophageal Cancer 2 1 3
Esophageal Varices 0 1 1
Essential Thrombocythemia 5 2 7
Essential Tremor 13 2 15
Exocrine Pancreatic Insufficiency (EPI) 7 2 9
Eye Cancer 0 2 2
Fabry disease 2 0 2
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
Feeding Tubes 5 1 6
Fetal Alcohol Syndrome (FAS) 0 6 6
Fibrocystic Breasts 3 1 4
Fibrodysplasia Ossificans Progressiva (FOP) 0 2 2
Fibromuscular Dysplasia (FMD) 4 0 4
Fibromyalgia (FM) 861 57 918
Fibrous Dysplasia 5 0 5
Fistula 6 4 10
Foot Drop 5 1 6
Fragile X Syndrome (FXS) 0 2 2
Functional Neurological Disorder (FND) 74 6 80
Gall Stones 28 3 31
Ganglioneuroblastoma 0 1 1
Gastric Bypass 6 1 7
Gastric Dysmotility 17 1 18
Gastritis 23 4 27
Gastroesophageal Reflux Disease (GERD) 158 24 182
Gastrointestinal Stromal Tumor (GIST) 1 1 2
Gastroparesis (GP) 55 5 60
Gastroschisis 2 1 3
Gaucher Disease (GD) 2 2 4
Gender Dysphoria 6 1 7
Giant Cell Arteritis (GCA) 4 0 4
Gluten Intolerance 10 0 10
Glycogen Storage Disease (GSD) 0 1 1
Goiter 3 1 4
Goldenhar Syndrome 2 0 2
Gout 28 7 35
Graft Versus Host Disease (GVHD) 1 1 2
Granular Cell Tumors 1 0 1
Granuloma Annulare (GA) 1 0 1
Grave's Disease (GD) 29 3 32
Guillain-Barre Syndrome (GBS) 6 2 8
Hashimoto's Disease (HT) 52 3 55
Head and Neck Cancer 8 3 11
Headache 44 6 50
Hearing Aid 45 11 56
Hearing Loss 135 38 173
Heart Disease 340 159 499
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 15 1 16
Hemophilia 12 2 14
Hemorrhoids 6 0 6
Hepatitis 17 5 22
Hereditary alpha-tryptasemia (H?T) 1 0 1
Hereditary Angioedema (HAE) 8 0 8
Hereditary hemorrhagic telangiectasia (HHT) 1 1 2
Hereditary Spastic Paraparesis (HSP) 5 0 5
Hereditary Spastic Paraplegia (HSP) 1 1 2
Hernia 108 16 124
Herpes (HSV) 8 0 8
Hidradenitis Suppurativa (HS) 45 5 50
High Blood Pressure (Hypertension, HBP) 507 101 608
High Cholesterol (Hyperlipidemia) 208 38 246
Hip Dysplasia 17 4 21
Hip Replacement 28 5 33
Hirschsprung's Disease (HD, HSCR) 2 2 4
Hirsutism 3 0 3
HIV 20 3 23
Hodgkins Lymphoma 11 2 13
Horner Syndrome 2 0 2
Human Growth Hormone Deficiency (GHD) 13 5 18
Human Papillomavirus (Human Papillomavirus (HPV) 3 0 3
Huntington's Disease (HD) 5 5 10
Hydrocephalus 7 8 15
Hyperaldosteronism 1 0 1
Hyperemesis Gravidarum (HG, Morning Sickness) 1 0 1
Hyperhidrosis 13 0 13
Hyperkalemia 1 1 2
Hypermobility Syndrome 135 28 163
Hyperparathyroidism 17 3 20
Hypersomnia 4 0 4
Hyperthyroidism 37 5 42
Hypocalcemia 2 0 2
Hypoglycemia (Low Blood Sugar) 18 0 18
Hypokalemia 1 1 2
Hypokalemic Periodic Paralysis 0 1 1
Hypoparathyroidism 9 2 11
Hypophosphatasia (HPP) 1 0 1
Hypothyroidism 356 17 373
Hypotonia 0 3 3
Hypoxic Ischemic Encephalopathy (HIE) 0 3 3
Hysterectomy 11 0 11
Immune Thrombocytopenic Purpura (ITP) 11 0 11
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 49 17 66
Infertility 6 1 7
Insomnia 70 7 77
Intellectual Disability 4 10 14
Intermittent Explosive Disorder (IED) 1 0 1
Interstitial Cystitis (IC) 21 0 21
Interstitial Lung Disease (ILD) 5 1 6
Intracranial Hemorrhage (Brain Bleeds) 3 5 8
Intracranial Hypertension (IH, Pseudotumor Cerebri) 27 2 29
intracranial Pressure (ICP) 3 0 3
Iritis 2 1 3
Irritable Bowel Syndrome (IBS) 370 40 410
Juvenile Arthritis (JA) 8 1 9
Keratosis Pilaris (follicular keratosis) 3 0 3
Kidney Disease 126 45 171
Klinefelter Syndrome (XXY Syndrome) 2 1 3
Klippel-Feil Syndrome (KFS) 4 0 4
Knee Replacement 25 2 27
Lactose Intolerance 16 1 17
Langerhans Cell Histiocytosis (LCH) 1 0 1
Laryngeal Cancer 1 2 3
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 0 1 1
Learning Disability 17 65 82
Legg-Calve-Perthes Disease (LCPD) 1 0 1
Leiomyosarcoma 2 0 2
Leukemia 22 8 30
Leukodystrophy 2 2 4
Lichen Planus 9 0 9
Lichen Sclerosis (LS) 16 0 16
Lipedema 9 1 10
Lipodystrophy 1 0 1
Liposarcoma 1 0 1
Liver Cancer 4 6 10
Liver Disease (not hepatitis) 91 25 116
Loeys Dietz Syndrome 3 0 3
Loin Pain Hematuria Syndrome (LPHS) 1 0 1
Loss of Mobility 33 28 61
Low Blood Pressure (Hypotension) 48 7 55
Low Testosterone 2 3 5
Lung Cancer 25 18 43
Lung Disease 51 14 65
Lupus 120 9 129
Lyme Disease 10 0 10
Lymphedema 41 10 51
Lymphocytic Colitis 1 0 1
Lymphoma 3 3 6
Lymphoproliferative Disease (LPD) 0 1 1
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 2 0 2
Macular Degeneration 13 12 25
Mal de debarquement Syndrome (MdDS) 3 0 3
Malabsorption 3 0 3
Malignant Hyperthermia (MH) 1 0 1
Marfan Syndrome (MFS) 1 1 2
Mastocytosis (Mast Cell Activating Disease, MCAD) 35 1 36
May Thurner Syndrome 1 0 1
Memory Loss 8 19 27
Meniere's Disease (MD) 26 1 27
Menopause 41 0 41
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 10 0 10
Mental Illness 104 61 165
Metabolic Syndrome 3 1 4
Methicillin-Resistant Staphylococcus Aureus (MRSA) 1 0 1
Microcephaly 1 8 9
Microscopic Colitis 4 0 4
Microtia 2 0 2
Migraine 372 19 391
Mitochondrial Disease 2 4 6
Mixed Connective Tissue Disease (MCTD) 16 0 16
Monoclonal gammopathy of undetermined significance (MGUS) 11 0 11
Mood Disorder 14 2 16
Morgellons Disease (MD) 1 0 1
Moyamoya Disease 2 1 3
MTHFR 1 0 1
Mucopolysaccharidoses (MPS) 1 1 2
Multiple Myeloma (MM) 10 9 19
Multiple Sclerosis (MS) 253 26 279
Multiple System Atrophy (MSA) 0 4 4
Muscle Spasms 10 2 12
Muscle Tension Dysphonia (MTD) 1 0 1
Muscular Dystrophy (MD) 27 14 41
Myasthenia Gravis (MG) 14 3 17
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 2 1 3
Myelodysplastic syndrome (MDS) 1 1 2
Myelofibrosis 2 2 4
Myeloproliferative Neoplasms 1 0 1
Myopathy 3 0 3
Myositis 1 0 1
Narcolepsy 19 2 21
Nasal Polyps 2 0 2
Neck Cancer 1 1 2
Neck Surgery 1 0 1
Neuralgia 40 1 41
Neuroendocrine Cancer (NET) 6 1 7
Neurofibromatosis (NF) 15 2 17
Neurogenic Bladder 9 2 11
Neurogenic Bowel 2 2 4
Neuromyelitis optica (NMO) 7 4 11
Neuropathy 143 14 157
Neutropenia 3 1 4
Niemann-Pick Disease 0 1 1
Non-Hodgkin's Lymphoma (NHL) 17 7 24
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 6 1 7
Noonan Syndrome (NS) 0 1 1
Obesity 59 17 76
Obsessive Compulsive Disorder (OCD) 88 14 102
Oppositional Defiant Disorder (ODD) 0 11 11
Organ Transplant 31 3 34
Osteoarthritis (OA) 784 113 897
Osteogenesis Imperfecta (OI) 1 0 1
Osteomyelitis (OM) 4 3 7
Osteopenia 44 1 45
Osteoporosis 121 24 145
Ostomy 1 0 1
Ovarian Cancer 10 6 16
Ovarian Cyst 13 1 14
Overactive Bladder (OAB) 38 2 40
Pancreatic Cancer 4 5 9
Pancreatitis 19 7 26
Paralysis 16 8 24
Paraneoplastic Syndrome 1 0 1
Parkinson's Disease (PD) 19 42 61
Paroxysmal Nocturnal Hemoglobinuria (PNH) 2 0 2
Pelvic Congestion Syndrome (PCS) 2 0 2
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 16 5 21
Pituitary Tumor 11 1 12
Plantar Fasciitis (PF) 34 1 35
Pneumonia 10 0 10
Poland Syndrome 1 1 2
Polio 2 3 5
Polycystic Ovarian Syndrome (PCOS) 128 3 131
Polycythemia Vera (PV) 4 0 4
Polymyalgia Rheumatica (PMR) 24 3 27
Pompe Disease 0 1 1
Porphyria 2 0 2
Post-Polio Syndrome (PPS) 5 3 8
Posttraumatic Stress Disorder (PTSD) 271 39 310
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 3 1 4
Premenstrual Dysphoric Disorder (PMDD) 16 0 16
Primary Immunodeficiency (PID) 4 2 6
Progressive Multifocal Leukoencephalopathy (PML) 0 1 1
Progressive Supranuclear Palsy (PSP) 0 3 3
Prolactinoma 3 0 3
Prostate Cancer 13 11 24
Protein Deficiency 2 0 2
Proteinuria (Protein in Urine) 2 0 2
Prurigo Nodularis (PN) 7 0 7
Psoriasis 133 17 150
Psoriatic Arthritis (PsA) 48 5 53
Ptosis (Drooping eye, Blepharoptosis) 0 1 1
Pulmonary Arterial Hypertension (PAH) 11 6 17
Pulmonary Embolism (PE) 18 2 20
Pulmonary Fibrosis (PF) 14 3 17
Pyoderma Gangrenosum (PG) 1 1 2
Pyruvate Kinase Deficiency (PKD) 0 1 1
Raynaud's Syndrome 109 8 117
Rectal Cancer (CRC) 1 1 2
Rectocele 5 0 5
Renal Cell Carcinoma (Kidney Cancer, RCC) 7 2 9
Restless Leg Syndrome (RLS) 46 5 51
Rheumatoid Arthritis (RA) 330 73 403
Rickets (Osteomalacia) 2 0 2
Rosacea 8 0 8
Sacroiliac Joint Disease (SI) 3 3 6
Sarcoidosis 26 5 31
Sarcoma 7 0 7
Scheuermann's Kyphosis 12 3 15
Schizophrenia 27 34 61
Sciatica 81 5 86
Scleroderma 13 5 18
Scoliosis 67 12 79
Secondary Adrenal insufficiency 8 0 8
Sensory Processing Disorder (SPD) 9 32 41
Sepsis 13 2 15
Shingles (Herpes Zoster) 5 0 5
Short Bowel Syndrome (SBS, Short Gut) 8 0 8
Sickle Cell Disease (SCD) 9 6 15
Sickle Cell Disease (SCD): Sickle Cell Trait 4 0 4
Sinusitis 26 4 30
Sjogren's Syndrome (SjS, SS) 46 2 48
Skin Cancer 5 1 6
Skin Cancer- Melanoma 13 4 17
Sleep Apnea (OSA) 102 24 126
Sleep Disorder 43 8 51
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) 18 5 23
Spinal Cancer 0 1 1
Spinal Cord 163 26 189
Spinal Muscular Atrophy (SMA) 12 5 17
Sprengel Deformity 1 0 1
Squamous Cell Carcinoma (SCC) 2 2 4
Stickler Syndrome 2 0 2
Stiff Person Syndrome (SPS) 2 0 2
Stomach Cancer 3 3 6
Stomach Ulcer 9 1 10
Stroke 93 85 178
Subcortical Band Heterotopia 0 1 1
Subglottic Stenosis (SGS) 2 0 2
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 1 0 1
Syncope 10 0 10
Synesthesia 1 0 1
Syringomyelia 9 0 9
Tardive Dyskinesia (TD) 1 1 2
Tarlov Cysts 4 0 4
Tay Sachs (TSD) 0 1 1
Temporomandibular joint (TMJ) 40 1 41
Tendonitis 14 1 15
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) 9 0 9
Thyroid Nodule 4 0 4
Thyroidectomy 1 0 1
Tics 1 3 4
Torticollis (Wry Neck) 2 0 2
Tourette Syndrome (TS) 6 3 9
Tracheobronchomalacia (TBM) 1 0 1
Tracheomalacia 1 1 2
Traumatic Brain Injury (TBI) 13 7 20
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 4 0 4
Ulcerative Colitis (UC) 126 5 131
Undifferentiated Connective Tissue Disease (UCTD) 16 0 16
Urethral Prolapse 0 1 1
Urinary Tract Infection (UTI) 12 3 15
Urticaria (Hives) 30 6 36
Uterine Cancer 2 0 2
Uterine Fibroids 29 0 29
Uterine Leiomyosarcoma 1 0 1
Uterine Polyps 3 0 3
Uveitis 9 3 12
Vaginismus 3 0 3
Varicose Veins 8 3 11
Vasculitis 19 5 24
Vertigo 33 5 38
Vision Impairment 142 40 182
Vitamin B12 Deficiency 53 4 57
Vitamin D Deficiency 38 1 39
Vitiligo 10 0 10
Vocal Cord Dysfunction (VCD) 5 0 5
Von Willebrand Disease (VWD) 5 1 6
Vulvar Cancer 3 1 4
Vulvodynia 2 0 2
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 0 1 1
Wegener's Granulomatosis with Polyangiitis (GPA) 3 0 3
Wheelchair 214 103 317
Williams Syndrome (WS) 0 1 1
Germany
Disease/Condition Patients Caregivers Total
Achalasia 1 0 1
Acne 3 1 4
Acoustic Neuroma (Vestibula Schwannoma) 2 0 2
Adams-Oliver Syndrome (AOS) 1 0 1
Addiction 10 2 12
Addison's Disease (Adrenal insufficiency) 2 0 2
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Agenesis of the Corpus Callosum (ACC) 1 0 1
Aicardi Syndrome 1 0 1
Allergies 47 1 48
Alopecia 5 0 5
Alzheimer's Disease (AD) 1 45 46
Amplified Musculoskeletal Pain Syndrome 1 0 1
Amputation 3 0 3
Amyloidosis 0 1 1
Amyotrophic Lateral Sclerosis (ALS) 0 1 1
Anal Cancer 2 0 2
Anemia 11 1 12
Aneurysm 1 4 5
Ankylosing Spondylitis (AS) 5 0 5
Anosmia (loss of smell) 1 0 1
Anoxic Brain Injury 1 1 2
Antisynthetase Syndrome 1 0 1
Anxiety 53 3 56
Aortic Disease 3 3 6
Aphasia 1 1 2
Apraxia 0 1 1
Arachnoid Cyst 1 1 2
Arachnoiditis 1 0 1
Arteriovenous Malformation (AVM) 1 0 1
Asthma 82 7 89
Ataxia 1 0 1
Atrial Fibrillation (AFIB) 4 2 6
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 15 3 18
Autism 11 5 16
Autoimmune Disease 7 1 8
Avascular Necrosis (AVN, Osteonecrosis) 1 0 1
Beckwith-Wiedemann Syndrome (BWS) 1 0 1
Behcet's Disease (BD) 2 0 2
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 5 1 6
Bile Acid Malabsorption (BAD) 1 0 1
Bipolar 20 0 20
Bladder Cancer 3 1 4
Blood Cancer 2 0 2
Blood Clotting Disorder 1 0 1
Bone Cancer 1 0 1
Borderline Personality Disorder (BPD) 31 0 31
Brain Aneurysm 1 2 3
Brain Damage 1 0 1
Brain Tumor 4 2 6
BRCA Mutation 3 0 3
Breast Cancer (BC) 9 4 13
Bronchitis 3 2 5
Bulging Disc 11 2 13
Bursitis 1 0 1
Cancer 46 10 56
Carcinoma 1 0 1
Cardiofaciocutaneous Syndrome (CFC syndrome) 1 0 1
Carpal Tunnel Syndrome (CTS) 2 0 2
Castleman Disease (CD) 3 1 4
Celiac Disease (CCD) 3 0 3
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) 14 1 15
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 12 4 16
Chronic Intestinal Pseudo-obstruction (CIPO) 2 0 2
Chronic obstructive pulmonary disease (COPD) 66 16 82
Chronic Pain 75 12 87
Chronic Venous Insufficiency (CVI) 2 1 3
Clostridium difficile (C Diff) 1 0 1
Clubfoot 1 1 2
Cluster Headache 3 0 3
Cognitive Impairment (CI) 0 2 2
Colon Cancer (CRC) 6 1 7
Colorectal Cancer (CRC) 1 1 2
Complex Regional Pain Syndrome (CRPS, RSD) 4 0 4
Congenital Sucrase-Isomaltase Deficiency (CSID) 1 0 1
Constipation 3 1 4
Coronavirus (COVID-19) 5 1 6
Craniocervical Instability (CCI) 1 0 1
Craniosynostosis 1 0 1
Crohn's Disease (CD) 18 0 18
Cushing's Disease (CS) 2 0 2
Deep Vein Thrombosis (DVT) 6 0 6
Degenerative Disc Disease (DDD) 11 2 13
Depression (MDD) 161 16 177
Developmental Delay (DD) 0 3 3
Diabetes (DM) 124 50 174
Disabled 1 1 2
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 6 1 7
Diverticulitis 1 0 1
Down Syndrome (DS) 1 0 1
Dysautonomia 6 0 6
Dyslexia 1 0 1
Dysmenorrhea (Painful Menstruation) 1 0 1
Dysphagia (Difficulty Swallowing) 1 0 1
Dystonia 2 0 2
Eating Disorder 11 0 11
Eczema (Atopic Dermatitis) 16 1 17
Edema 2 3 5
Ehlers-Danlos Syndrome (EDS) 9 0 9
Elephantiasis (Lymphatic Filariasis) 1 0 1
Encephalitis 2 1 3
Encephalocele 1 0 1
Endometrial Cancer 1 1 2
Endometriosis 7 0 7
Enlarged Spleen (Splenomegaly) 1 0 1
Enteric Hyperoxaluria 1 0 1
Eosinophilic Colitis (EC) 2 0 2
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 24 18 42
Erb's Palsy 2 0 2
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) 49 1 50
Functional Neurological Disorder (FND) 2 0 2
Galactosemia 1 0 1
Gall Stones 5 1 6
Ganglioneuroblastoma 1 0 1
Gastric Bypass 4 0 4
Gastric Dysmotility 2 0 2
Gastritis 14 1 15
Gastroesophageal Reflux Disease (GERD) 10 1 11
Gastroparesis (GP) 7 0 7
Gastroschisis 1 0 1
Gender Dysphoria 2 0 2
Gluten Intolerance 1 0 1
Gout 15 0 15
Grave's Disease (GD) 4 0 4
Guillain-Barre Syndrome (GBS) 3 0 3
Hashimoto's Disease (HT) 23 1 24
Head and Neck Cancer 1 0 1
Headache 25 1 26
Hearing Aid 3 0 3
Hearing Loss 18 2 20
Heart Disease 63 42 105
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 3 0 3
Hemorrhoids 6 0 6
Hepatitis 7 0 7
Hereditary Angioedema (HAE) 0 1 1
Hereditary Spastic Paraparesis (HSP) 3 1 4
Hereditary Spastic Paraplegia (HSP) 2 0 2
Hernia 3 1 4
Herpes (HSV) 1 0 1
Hidradenitis Suppurativa (HS) 2 0 2
High Blood Pressure (Hypertension, HBP) 128 32 160
High Cholesterol (Hyperlipidemia) 14 4 18
Hip Dysplasia 3 0 3
Hip Replacement 5 4 9
Hirsutism 1 0 1
HIV 6 1 7
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 4 0 4
Hyperparathyroidism 0 1 1
Hypersomnia 2 0 2
Hypoglycemia (Low Blood Sugar) 2 0 2
Hyponatremia 0 1 1
Hypoparathyroidism 2 0 2
Hypophosphatasia (HPP) 0 1 1
Hypothyroidism 38 1 39
Hypotonia 2 1 3
Hypoxic Ischemic Encephalopathy (HIE) 0 1 1
Immune Thrombocytopenic Purpura (ITP) 2 0 2
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 0 1 1
Incontinence 14 9 23
Insomnia 13 0 13
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) 3 0 3
Irritable Bowel Syndrome (IBS) 17 2 19
Juvenile Arthritis (JA) 1 0 1
Kaposi Sarcoma (KS) 1 0 1
Kawasaki Disease 1 0 1
Kidney Disease 23 9 32
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 7 3 10
Lactose Intolerance 2 1 3
Laryngeal Cancer 1 0 1
Laryngomalacia 2 0 2
Leukemia 1 4 5
Lichen Planus 0 1 1
Lipedema 15 0 15
Liposarcoma 1 0 1
Liver Cancer 1 3 4
Liver Disease (not hepatitis) 13 0 13
Loin Pain Hematuria Syndrome (LPHS) 1 0 1
Loss of Mobility 4 1 5
Lung Cancer 2 6 8
Lung Disease 4 2 6
Lupus 12 0 12
Lyme Disease 1 0 1
Lymphedema 15 1 16
Lymphocytic Colitis 1 0 1
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) 3 0 3
McCune-Albright Syndrome (MAS) 1 0 1
Memory Loss 1 3 4
Meniere's Disease (MD) 1 1 2
Menopause 2 0 2
Mental Illness 10 4 14
Microcephaly 0 1 1
Microscopic Colitis 1 0 1
Migraine 49 2 51
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) 36 8 44
Muscle Spasms 1 1 2
Muscular Dystrophy (MD) 2 1 3
Myasthenia Gravis (MG) 2 1 3
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 2 0 2
Myeloproliferative Neoplasms 1 0 1
Myopathy 1 0 1
Myositis 3 0 3
Narcolepsy 2 0 2
Nasal Polyps 1 0 1
Neck Surgery 0 1 1
Neuralgia 3 0 3
Neurofibromatosis (NF) 1 0 1
Neurogenic Bladder 2 0 2
Neurogenic Bowel 1 0 1
Neuropathy 23 5 28
Neutropenia 1 0 1
Obesity 57 6 63
Obsessive Compulsive Disorder (OCD) 3 0 3
Oral Cancer 1 1 2
Organ Transplant 2 1 3
Osteoarthritis (OA) 73 10 83
Osteomyelitis (OM) 0 1 1
Osteopenia 3 0 3
Osteoporosis 18 8 26
Ovarian Cancer 3 0 3
Ovarian Cyst 1 0 1
Overactive Bladder (OAB) 8 0 8
Pancreatic Cancer 1 0 1
Pancreatitis 5 1 6
Paralysis 12 5 17
Parkinson's Disease (PD) 4 12 16
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 0 1
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 2 0 2
Pemphigus / Pemphigoid 0 1 1
Periodontitis (Gum Disease) 2 0 2
Periventricular Leukomalacia (PVL) 1 0 1
Personality Disorder 3 2 5
Plantar Fasciitis (PF) 2 0 2
Pneumonia 1 1 2
Polio 1 0 1
Polychrondritis 0 1 1
Polycystic Ovarian Syndrome (PCOS) 3 0 3
Polycythemia Vera (PV) 1 0 1
Polymyalgia Rheumatica (PMR) 2 0 2
Porphyria 1 0 1
Posttraumatic Stress Disorder (PTSD) 55 4 59
Premenstrual Dysphoric Disorder (PMDD) 2 0 2
Primary Ciliary Dyskinesia (PCD) 3 0 3
Primary Immunodeficiency (PID) 2 0 2
Progressive Supranuclear Palsy (PSP) 1 1 2
Prolactinoma 1 0 1
Prostate Cancer 1 5 6
Psoriasis 28 0 28
Psoriatic Arthritis (PsA) 1 0 1
Ptosis (Drooping eye, Blepharoptosis) 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) 30 12 42
Rosacea 1 0 1
Sarcoidosis 2 1 3
Scheuermann's Kyphosis 1 0 1
Schizencephaly 1 0 1
Schizophrenia 11 3 14
Sciatica 2 0 2
Scleroderma 3 0 3
Scoliosis 18 1 19
Secondary Adrenal insufficiency 5 2 7
Sensory Processing Disorder (SPD) 1 0 1
Shingles (Herpes Zoster) 2 0 2
Sickle Cell Disease (SCD): Sickle Cell Trait 1 0 1
Sinusitis 6 0 6
Sjogren's Syndrome (SjS, SS) 2 0 2
Skin Cancer 1 1 2
Skin Cancer- Melanoma 1 0 1
Sleep Apnea (OSA) 10 2 12
Sleep Disorder 20 0 20
Spasticity 3 1 4
Speech Impairment 1 0 1
Spina Bifida (SB) 2 0 2
Spinal Cord 32 7 39
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 2 2
Stroke 20 24 44
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 4 0 4
Tics 2 0 2
Tourette Syndrome (TS) 2 0 2
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) 3 0 3
Uterine Cancer 3 0 3
Uterine Polyps 1 0 1
Uveitis 2 0 2
Varicose Veins 2 0 2
Vasculitis 1 1 2
Vertigo 3 2 5
Vision Impairment 27 8 35
Vitamin B12 Deficiency 6 1 7
Vitamin D Deficiency 2 1 3
Vitiligo 1 1 2
Von Willebrand Disease (VWD) 2 0 2
Wegener's Granulomatosis with Polyangiitis (GPA) 1 0 1
Wheelchair 6 5 11
France
Disease/Condition Patients Caregivers Total
Acne 10 1 11
Addiction 13 4 17
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 60 1 61
Alopecia 1 0 1
Alzheimer's Disease (AD) 4 75 79
Amplified Musculoskeletal Pain Syndrome 2 0 2
Amputation 6 3 9
Amyotrophic Lateral Sclerosis (ALS) 0 1 1
Anemia 12 1 13
Aneurysm 5 1 6
Ankylosing Spondylitis (AS) 32 1 33
Antiphospholipid Syndrome (APS) 2 0 2
Anxiety 68 1 69
Aortic Disease 3 1 4
Aphasia 0 1 1
Aplastic Anemia (AA) 2 0 2
Appendix Cancer 1 0 1
Arteriovenous Malformation (AVM) 0 1 1
Arthrogryposis Multiplex Congenita (AMC) 0 1 1
Asthma 135 7 142
Ataxia 0 1 1
Atrial Fibrillation (AFIB) 2 2 4
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 14 6 20
Autism 17 25 42
Autoimmune Disease 4 0 4
Barth Syndrome (BTHS) 1 0 1
Basal Cell Carcinoma (BCC) 0 1 1
Bell's Palsy 2 0 2
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 6 0 6
Bile Acid Malabsorption (BAD) 1 0 1
Bile Duct Cancer (Cholangiocarcinoma) 1 0 1
Bipolar 46 10 56
Bladder Cancer 4 2 6
Blood Cancer 0 1 1
Bone Cancer 1 0 1
Borderline Personality Disorder (BPD) 18 1 19
Brain Aneurysm 2 0 2
Brain Cancer 2 2 4
Brain Damage 1 0 1
Brain Tumor 6 1 7
Breast Cancer (BC) 50 7 57
Bronchitis 10 0 10
Bulging Disc 17 1 18
Calcinosis 1 0 1
Campomelic Dysplasia 1 0 1
Cancer 96 47 143
Candidiasis (Yeast Infection) 1 0 1
Carcinoid Cancer 0 1 1
Carcinoma 2 0 2
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Caroli Disease 1 0 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) 16 0 16
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 2 0 2
Chronic Intestinal Pseudo-obstruction (CIPO) 2 0 2
Chronic obstructive pulmonary disease (COPD) 44 4 48
Chronic Pain 49 3 52
Chronic Venous Insufficiency (CVI) 4 1 5
Clubfoot 1 0 1
Cluster Headache 5 0 5
Cognitive Impairment (CI) 4 3 7
Colon Cancer (CRC) 3 3 6
Colon Polyps 1 0 1
Colorectal Cancer (CRC) 1 1 2
Complex Regional Pain Syndrome (CRPS, RSD) 12 2 14
Congenital Myopathy 1 0 1
Constipation 6 0 6
Coronavirus (COVID-19) 26 5 31
Crohn's Disease (CD) 25 10 35
Cushing's Disease (CS) 3 0 3
Cytomegalovirus (CMV) 0 1 1
Deep Vein Thrombosis (DVT) 4 0 4
Degenerative Disc Disease (DDD) 17 3 20
Depression (MDD) 188 14 202
Developmental Delay (DD) 0 2 2
Diabetes (DM) 173 54 227
Disabled 8 8 16
Disruptive Mood Dysregulation Disorder (DMDD) 0 1 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 4 0 4
Diverticulitis 2 0 2
Down Syndrome (DS) 0 1 1
Dysautonomia 3 0 3
Dyskeratosis Congenita 1 0 1
Dyslexia 2 1 3
Dysmenorrhea (Painful Menstruation) 2 0 2
Dystonia 2 1 3
Eating Disorder 20 1 21
Eczema (Atopic Dermatitis) 28 2 30
Edema 5 0 5
Ehlers-Danlos Syndrome (EDS) 11 2 13
Elephantiasis (Lymphatic Filariasis) 0 1 1
Encephalitis 1 0 1
Endometriosis 40 1 41
Enlarged Spleen (Splenomegaly) 0 1 1
Eosinophilic Esophagitis (EOE) 1 1 2
Epicondylitis (Tennis Elbow) 2 1 3
Epilepsy 38 23 61
Erectile Dysfunction (ED) 1 0 1
Esophageal Cancer 1 1 2
Essential Thrombocythemia 1 0 1
Essential Tremor 1 0 1
Familial Hypercholesterolemia (FH) 18 0 18
Familial Mediterranean Fever (FMF) 0 1 1
Fibromuscular Dysplasia (FMD) 4 0 4
Fibromyalgia (FM) 117 6 123
Fragile X Syndrome (FXS) 1 0 1
Friedreich's Ataxia (FA) 0 1 1
Functional Neurological Disorder (FND) 6 1 7
Gall Stones 4 0 4
Gastric Bypass 1 0 1
Gastric Dysmotility 1 0 1
Gastritis 7 1 8
Gastroesophageal Reflux Disease (GERD) 22 1 23
Gender Dysphoria 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) 5 0 5
Guillain-Barre Syndrome (GBS) 0 1 1
Hashimoto's Disease (HT) 19 1 20
Head and Neck Cancer 2 0 2
Headache 11 1 12
Hearing Aid 5 0 5
Hearing Loss 19 3 22
Heart Disease 76 19 95
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 4 0 4
Hemorrhoids 4 0 4
Hepatitis 2 1 3
Hereditary Angioedema (HAE) 1 0 1
Hereditary Spastic Paraparesis (HSP) 1 0 1
Hereditary Spastic Paraplegia (HSP) 0 1 1
Hernia 14 1 15
Herpes (HSV) 3 0 3
Hidradenitis Suppurativa (HS) 2 1 3
High Blood Pressure (Hypertension, HBP) 173 20 193
High Cholesterol (Hyperlipidemia) 25 5 30
Hip Replacement 1 5 6
HIV 10 1 11
Hodgkins Lymphoma 0 1 1
Human Growth Hormone Deficiency (GHD) 2 0 2
Human Papillomavirus (Human Papillomavirus (HPV) 7 0 7
Huntington's Disease (HD) 1 1 2
Hydrocephalus 4 1 5
Hyperaldosteronism 1 0 1
Hyperemesis Gravidarum (HG, Morning Sickness) 1 0 1
Hypereosinophilic Syndrome (HES) 1 0 1
Hyperparathyroidism 7 0 7
Hypersomnia 3 0 3
Hyperthyroidism 17 1 18
Hypoglycemia (Low Blood Sugar) 4 0 4
Hypokalemia 1 0 1
Hypoparathyroidism 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 61 4 65
Immune Thrombocytopenic Purpura (ITP) 1 0 1
Incontinence 5 2 7
Infertility 3 0 3
Insomnia 27 3 30
Intellectual Disability 0 4 4
Interstitial Cystitis (IC) 3 0 3
Intracranial Hypertension (IH, Pseudotumor Cerebri) 4 0 4
Irritable Bowel Syndrome (IBS) 34 2 36
Juvenile Arthritis (JA) 1 1 2
Kidney Disease 17 6 23
Knee Replacement 5 1 6
Lactose Intolerance 1 0 1
Laryngeal Cancer 1 1 2
Learning Disability 0 1 1
Leiomyosarcoma 1 0 1
Leukemia 3 2 5
Leukopenia 1 0 1
Lichen Planus 1 0 1
Liposarcoma 0 1 1
Liver Cancer 4 3 7
Liver Disease (not hepatitis) 11 2 13
Loss of Mobility 9 5 14
Low Blood Pressure (Hypotension) 4 0 4
Lung Cancer 14 11 25
Lung Disease 13 4 17
Lupus 20 1 21
Lyme Disease 3 0 3
Lymphedema 2 0 2
Lymphoma 4 0 4
Macular Degeneration 1 3 4
Malignant Hyperthermia (MH) 1 0 1
Marfan Syndrome (MFS) 1 1 2
Mastocytosis (Mast Cell Activating Disease, MCAD) 1 0 1
Median arcuate ligament syndrome (MALS) 0 1 1
Memory Loss 5 13 18
Meniere's Disease (MD) 0 1 1
Menopause 10 0 10
Mental Illness 2 4 6
Microscopic Colitis 1 0 1
Migraine 79 4 83
Mood Disorder 13 3 16
Multiple Endocrine Neoplasia (MEN) 1 0 1
Multiple Myeloma (MM) 3 0 3
Multiple Sclerosis (MS) 54 15 69
Muscle Spasms 1 0 1
Myasthenia Gravis (MG) 1 0 1
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 1 0 1
Myeloproliferative Neoplasms 1 1 2
Myopathy 3 3 6
Narcolepsy 2 0 2
Nasal Polyps 2 0 2
Neck Cancer 1 0 1
Neuralgia 13 0 13
Neuroendocrine Cancer (NET) 0 1 1
Neurofibromatosis (NF) 2 0 2
Neurogenic Bladder 3 0 3
Neuromyelitis optica (NMO) 2 0 2
Neuropathy 27 2 29
Non-Hodgkin's Lymphoma (NHL) 2 1 3
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 2 0 2
Obesity 63 5 68
Obsessive Compulsive Disorder (OCD) 8 3 11
Oppositional Defiant Disorder (ODD) 1 0 1
Oral Cancer 2 0 2
Organ Transplant 6 5 11
Osteoarthritis (OA) 71 16 87
Osteogenesis Imperfecta (OI) 0 1 1
Osteoporosis 13 3 16
Ostomy 0 1 1
Ovarian Cancer 3 0 3
Ovarian Cyst 3 0 3
Overactive Bladder (OAB) 2 2 4
Pancreatic Cancer 1 1 2
Pancreatitis 3 1 4
Paralysis 12 11 23
Parkinson's Disease (PD) 5 25 30
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) 3 0 3
Personality Disorder 6 0 6
Pituitary Tumor 2 0 2
Plantar Fasciitis (PF) 1 0 1
Pneumonia 2 1 3
Polio 2 0 2
Polycystic Ovarian Syndrome (PCOS) 13 1 14
Polymicrogyria (PMG) 0 1 1
Post-Polio Syndrome (PPS) 1 0 1
Posttraumatic Stress Disorder (PTSD) 30 2 32
Pre-exposure Prophylaxis (PrEP) 1 0 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 1 0 1
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Prolactinoma 1 0 1
Prostate Cancer 5 5 10
Protein Deficiency 2 0 2
Psoriasis 35 0 35
Psoriatic Arthritis (PsA) 9 1 10
Pulmonary Arterial Hypertension (PAH) 9 1 10
Pulmonary Embolism (PE) 3 0 3
Pulmonary Fibrosis (PF) 1 2 3
Raynaud's Syndrome 5 0 5
Renal Cell Carcinoma (Kidney Cancer, RCC) 2 2 4
Restless Leg Syndrome (RLS) 10 0 10
Rheumatoid Arthritis (RA) 38 13 51
Rosacea 5 0 5
Sacroiliac Joint Disease (SI) 1 0 1
Sarcoidosis 4 0 4
Sarcoma 1 1 2
Scheuermann's Kyphosis 2 0 2
Schizophrenia 5 11 16
Sciatica 17 0 17
Scleroderma 1 1 2
Scoliosis 26 4 30
Secondary Adrenal insufficiency 1 0 1
Sensory Processing Disorder (SPD) 3 0 3
Sepsis 1 0 1
Shingles (Herpes Zoster) 2 0 2
Shoulder Replacement 0 1 1
Sickle Cell Disease (SCD) 1 0 1
Sinusitis 9 0 9
Sjogren's Syndrome (SjS, SS) 5 2 7
Skin Cancer 1 1 2
Skin Cancer- Melanoma 3 1 4
Sleep Apnea (OSA) 32 5 37
Sleep Disorder 20 2 22
Spasticity 1 0 1
Speech Impairment 4 1 5
Spina Bifida (SB) 6 0 6
Spinal Cord 23 0 23
Spinal Muscular Atrophy (SMA) 2 2 4
Sprengel Deformity 1 0 1
Squamous Cell Carcinoma (SCC) 1 0 1
Stomach Cancer 3 1 4
Stomach Ulcer 12 0 12
Stroke 21 24 45
Syringomyelia 4 0 4
Tarlov Cysts 1 0 1
Temporomandibular joint (TMJ) 2 0 2
Tendonitis 17 0 17
Testicular Cancer 1 0 1
Thalassemia 1 0 1
Thoracic Outlet Syndrome (TOS) 1 0 1
Throat Cancer 2 3 5
Thrombocytopenia (TCP) 1 0 1
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 6 0 6
Thyroid Eye Disease (TED) 0 1 1
Thyroid Nodule 9 0 9
Thyroidectomy 2 0 2
Tics 2 0 2
Tracheomalacia 0 1 1
Tuberculosis 3 0 3
Ulcerative Colitis (UC) 7 1 8
Undifferentiated Connective Tissue Disease (UCTD) 1 0 1
Urinary Tract Infection (UTI) 2 0 2
Urticaria (Hives) 2 0 2
Uterine Cancer 6 2 8
Uterine Fibroids 4 0 4
Uveitis 2 1 3
Varicose Veins 6 0 6
Vasculitis 2 0 2
Vertebral Artery Dissection (VAD) 1 0 1
Vertigo 2 0 2
Vision Impairment 32 12 44
Vitamin B12 Deficiency 1 0 1
Vitamin D Deficiency 1 0 1
Vitiligo 7 0 7
Von Willebrand Disease (VWD) 1 0 1
Vulvodynia 2 0 2
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 1 0 1
Wheelchair 21 27 48
Italy
Disease/Condition Patients Caregivers Total
Achalasia 3 0 3
Acne 13 0 13
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 2 0 2
Addiction 22 6 28
Addison's Disease (Adrenal insufficiency) 8 1 9
Adenomyosis 23 0 23
Adhesive Capsulitis (Frozen Shoulder) 6 0 6
Adrenal Cortical Carcinoma (ACC) 1 1 2
Agenesis of the Corpus Callosum (ACC) 0 1 1
Allergies 249 9 258
Alopecia 22 0 22
Alpha 1 Antitrypsin Deficiency (A1AD) 1 0 1
Alternating Hemiplegia of Childhood (AHC) 1 0 1
Alzheimer's Disease (AD) 8 160 168
Amplified Musculoskeletal Pain Syndrome 6 0 6
Amputation 1 5 6
Amyloidosis 1 1 2
Amyotrophic Lateral Sclerosis (ALS) 2 14 16
Anal Cancer 0 1 1
Anemia 95 7 102
Aneurysm 23 3 26
Ankylosing Spondylitis (AS) 28 1 29
Anosmia (loss of smell) 3 0 3
Antiphospholipid Syndrome (APS) 12 2 14
Antisynthetase Syndrome 1 0 1
Anxiety 346 20 366
Aortic Disease 15 13 28
Aphasia 0 2 2
Aplastic Anemia (AA) 1 0 1
Appendix Cancer 1 0 1
Arachnoiditis 1 1 2
Arteriovenous Malformation (AVM) 3 1 4
Arthrogryposis Multiplex Congenita (AMC) 1 0 1
Asthma 256 19 275
Ataxia 2 2 4
Atrial Fibrillation (AFIB) 28 18 46
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 14 8 22
Auditory Processing Disorder (APD) 2 0 2
Autism 14 31 45
Autoimmune Disease 23 1 24
Autoimmune Encephalitis (AE) 0 2 2
Avascular Necrosis (AVN, Osteonecrosis) 6 2 8
Barrett's Esophagus 2 0 2
Basal Cell Carcinoma (BCC) 4 0 4
Behcet's Disease (BD) 9 2 11
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 32 3 35
Beta Thalassemia (Cooley s Anemia) 6 2 8
Bile Duct Cancer (Cholangiocarcinoma) 0 1 1
Bipolar 118 18 136
Bladder Cancer 9 3 12
Blood Cancer 4 2 6
Blood Clot 9 3 12
Blood Clotting Disorder 8 1 9
Bone Cancer 4 1 5
Borderline Personality Disorder (BPD) 54 6 60
Brain Aneurysm 17 2 19
Brain Cancer 2 1 3
Brain Damage 3 2 5
Brain Tumor 15 4 19
BRCA Mutation 3 0 3
Breast Cancer (BC) 108 8 116
Bronchiectasis 6 0 6
Bronchitis 29 3 32
Bronchopulmonary Dysplasia (BPD) 2 0 2
Bulging Disc 26 0 26
Bursitis 6 0 6
Campomelic Dysplasia 1 0 1
Cancer 189 34 223
Candidiasis (Yeast Infection) 11 0 11
Carcinoid Cancer 2 0 2
Carcinoma 30 4 34
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 30 1 31
Castleman Disease (CD) 0 3 3
Celiac Disease (CCD) 68 8 76
Cellulitis 2 0 2
Central Pain Syndrome (CPS) 1 0 1
Cerebral Palsy (CP) 0 1 1
Cervical Cancer 6 0 6
Cervical Dystonia 6 0 6
Charge Syndrome 0 1 1
Chiari Malformation (CM) 16 2 18
Chronic Fatigue Syndrome (CFS, ME) 61 0 61
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 9 4 13
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 69 24 93
Chronic Pain 138 6 144
Chronic Venous Insufficiency (CVI) 29 6 35
Cleft 3 0 3
Clubfoot 2 1 3
Cluster Headache 25 0 25
Cognitive Impairment (CI) 1 3 4
Colon Cancer (CRC) 12 3 15
Colon Polyps 2 0 2
Colonic Inertia 2 0 2
Color Blind 3 0 3
Colorectal Cancer (CRC) 7 1 8
Complex Regional Pain Syndrome (CRPS, RSD) 2 0 2
Congenital Adrenal Hyperplasia (CAH) 2 0 2
Congenital Myopathy 6 0 6
Constipation 14 5 19
Conversion Disorder (CD) 4 0 4
Coronavirus (COVID-19) 16 4 20
Costochondritis 1 0 1
Cowden Syndrome (CS) 1 0 1
Craniocervical Instability (CCI) 9 0 9
Crohn's Disease (CD) 38 7 45
Cushing's Disease (CS) 5 0 5
Cyclic Vomiting Syndrome (CVS) 2 0 2
Cystic Fibrosis (CF) 4 4 8
Cystinosis 1 1 2
Cytomegalovirus (CMV) 1 0 1
Dandy Walker Syndrome (DWS) 1 0 1
Darier Disease (DD Keratosis Follicularis) 1 1 2
Deep Vein Thrombosis (DVT) 23 6 29
Degenerative Disc Disease (DDD) 26 2 28
Deletion Duplication Syndrome 1 2 3
Depression (MDD) 369 31 400
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) 534 139 673
Disabled 6 3 9
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 5 0 5
Diverticulitis 42 4 46
Down Syndrome (DS) 0 6 6
Dry Mouth 1 0 1
Duodenitis 1 0 1
Dupuytren's Contracture 2 1 3
Dwarfism 1 1 2
Dysautonomia 9 2 11
Dyslexia 3 0 3
Dysmenorrhea (Painful Menstruation) 23 0 23
Dysphagia (Difficulty Swallowing) 14 5 19
Dystonia 3 1 4
Eating Disorder 58 1 59
Eczema (Atopic Dermatitis) 71 1 72
Edema 2 0 2
Ehlers-Danlos Syndrome (EDS) 9 0 9
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 1 1 2
Endometrial Cancer 1 0 1
Endometriosis 128 1 129
Enlarged Spleen (Splenomegaly) 3 0 3
Eosinophilic Colitis (EC) 1 0 1
Eosinophilic Esophagitis (EOE) 6 0 6
Eosinophilic Gasteroenteritis (EG) 4 0 4
Epicondylitis (Tennis Elbow) 7 0 7
Epidermolysis Bullosa (EB) 4 0 4
Epilepsy 133 54 187
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 10 3 13
Ewing's Sarcoma 2 0 2
Exocrine Pancreatic Insufficiency (EPI) 2 1 3
Familial Adenomatous Polyposis (FAP) 3 0 3
Familial Hypercholesterolemia (FH) 54 4 58
Familial Mediterranean Fever (FMF) 0 1 1
Feeding Tubes 1 0 1
Fibrocystic Breasts 8 0 8
Fibrodysplasia Ossificans Progressiva (FOP) 1 0 1
Fibromyalgia (FM) 436 7 443
Fibrosing Mediastinitis 1 0 1
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) 4 0 4
Gall Stones 23 0 23
Ganglioneuroblastoma 0 1 1
Gastric Bypass 12 0 12
Gastric Dysmotility 1 1 2
Gastritis 112 6 118
Gastroesophageal Reflux Disease (GERD) 169 6 175
Gastrointestinal Stromal Tumor (GIST) 3 0 3
Gastroparesis (GP) 1 0 1
Gaucher Disease (GD) 1 0 1
Gender Dysphoria 3 0 3
Giant Cell Arteritis (GCA) 0 1 1
Gluten Intolerance 23 0 23
Glycogen Storage Disease (GSD) 0 1 1
Goiter 6 0 6
Gout 7 2 9
Graft Versus Host Disease (GVHD) 0 1 1
Granuloma Annulare (GA) 1 0 1
Grave's Disease (GD) 14 2 16
Guillain-Barre Syndrome (GBS) 2 2 4
Hashimoto's Disease (HT) 281 9 290
Head and Neck Cancer 1 2 3
Headache 104 3 107
Hearing Aid 9 4 13
Hearing Loss 78 22 100
Heart Disease 339 103 442
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 20 0 20
Hemorrhoids 34 2 36
Hepatitis 44 1 45
Hereditary Angioedema (HAE) 3 0 3
Hereditary Spastic Paraparesis (HSP) 3 3 6
Hereditary Spastic Paraplegia (HSP) 2 2 4
Hernia 159 7 166
Herpes (HSV) 8 0 8
Hidradenitis Suppurativa (HS) 15 0 15
High Blood Pressure (Hypertension, HBP) 647 95 742
High Cholesterol (Hyperlipidemia) 177 18 195
Hip Dysplasia 2 0 2
Hip Replacement 5 2 7
Hirsutism 8 0 8
HIV 33 6 39
Hodgkins Lymphoma 10 2 12
Holoprosencephaly (HPE) 0 1 1
Human Growth Hormone Deficiency (GHD) 9 5 14
Human Papillomavirus (Human Papillomavirus (HPV) 17 2 19
Huntington's Disease (HD) 1 3 4
Hydrocephalus 9 0 9
Hyperaldosteronism 2 0 2
Hyperemesis Gravidarum (HG, Morning Sickness) 3 0 3
Hyperhidrosis 10 1 11
Hyperkalemia 0 1 1
Hypermobility Syndrome 1 0 1
Hyperparathyroidism 7 0 7
Hypersomnia 3 0 3
Hyperthyroidism 59 3 62
Hypocalcemia 4 0 4
Hypoglycemia (Low Blood Sugar) 9 1 10
Hypohidrotic Ectodermal Dysplasia (HED) 2 0 2
Hypokalemia 4 1 5
Hypokalemic Periodic Paralysis 1 0 1
Hyponatremia 0 1 1
Hypoparathyroidism 9 0 9
Hypophosphatasia (HPP) 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 362 14 376
Hypotonia 5 0 5
Hypoxic Ischemic Encephalopathy (HIE) 1 1 2
Hysterectomy 6 1 7
Ichthyosis 0 1 1
Immune Thrombocytopenic Purpura (ITP) 4 0 4
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 2 0 2
Incontinence 23 9 32
Incontinentia Pigmenti (IP) 1 0 1
Infertility 15 1 16
Insomnia 80 2 82
Intellectual Disability 1 9 10
Interstitial Cystitis (IC) 24 1 25
Interstitial Lung Disease (ILD) 2 1 3
Intracranial Hemorrhage (Brain Bleeds) 1 2 3
Intracranial Hypertension (IH, Pseudotumor Cerebri) 5 0 5
Irritable Bowel Syndrome (IBS) 120 2 122
Juvenile Arthritis (JA) 15 1 16
Kaposi Sarcoma (KS) 1 2 3
Keratosis Pilaris (follicular keratosis) 0 1 1
Kidney Disease 116 30 146
Klinefelter Syndrome (XXY Syndrome) 4 1 5
Klippel-Trenaunay Syndrome (KTS) 1 0 1
Knee Replacement 12 2 14
Lactose Intolerance 47 0 47
Larsen syndrome 1 0 1
Laryngeal Cancer 1 0 1
Learning Disability 1 3 4
Legg-Calve-Perthes Disease (LCPD) 1 0 1
Leiomyosarcoma 2 0 2
Leukemia 16 8 24
Leukopenia 1 0 1
Lichen Planus 7 1 8
Lichen Sclerosis (LS) 9 0 9
Lipedema 10 1 11
Lipodystrophy 1 0 1
Liposarcoma 0 1 1
Livedo Reticularis (LR) 1 0 1
Liver Cancer 3 6 9
Liver Disease (not hepatitis) 55 9 64
Loss of Mobility 11 6 17
Low Blood Pressure (Hypotension) 45 2 47
Low Testosterone 1 0 1
Lung Cancer 17 6 23
Lung Disease 31 13 44
Lupus 64 4 68
Lyme Disease 5 0 5
Lymphedema 19 2 21
Lymphocytic Colitis 2 0 2
Lymphoma 2 1 3
Macular Degeneration 9 5 14
Malabsorption 7 1 8
Marfan Syndrome (MFS) 2 0 2
Mastocytosis (Mast Cell Activating Disease, MCAD) 6 3 9
Memory Loss 3 6 9
Meniere's Disease (MD) 9 0 9
Menopause 34 0 34
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 3 0 3
Mental Illness 7 5 12
Mesothelioma 0 1 1
Metabolic Syndrome 40 2 42
Metatarsalgia 2 0 2
Microcephaly 0 1 1
Microscopic Colitis 4 0 4
Migraine 229 6 235
Mitochondrial Disease 2 1 3
Mixed Connective Tissue Disease (MCTD) 6 0 6
Monoclonal gammopathy of undetermined significance (MGUS) 10 0 10
Mood Disorder 51 1 52
MTHFR 17 1 18
Multiple Endocrine Neoplasia (MEN) 2 0 2
Multiple Myeloma (MM) 9 2 11
Multiple Sclerosis (MS) 141 22 163
Multiple System Atrophy (MSA) 1 0 1
Muscle Spasms 9 1 10
Muscular Dystrophy (MD) 12 4 16
Myasthenia Gravis (MG) 27 3 30
Mycobacterium Avium Complex (MAC) 1 0 1
Myelodysplastic syndrome (MDS) 2 1 3
Myelofibrosis 1 0 1
Myopathy 8 2 10
Myositis 3 0 3
Narcolepsy 7 1 8
Nasal Polyps 11 0 11
Neck Cancer 1 0 1
Neck Surgery 1 0 1
Neuralgia 15 3 18
Neuroendocrine Cancer (NET) 1 0 1
Neurofibromatosis (NF) 9 2 11
Neurogenic Bladder 14 1 15
Neurogenic Bowel 3 0 3
Neuromyelitis optica (NMO) 2 0 2
Neuropathy 82 11 93
Neutropenia 1 1 2
Non-Hodgkin's Lymphoma (NHL) 14 3 17
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 15 1 16
Obesity 205 9 214
Obsessive Compulsive Disorder (OCD) 32 4 36
Oppositional Defiant Disorder (ODD) 0 4 4
Organ Transplant 22 3 25
Osteoarthritis (OA) 180 26 206
Osteogenesis Imperfecta (OI) 1 1 2
Osteomyelitis (OM) 2 0 2
Osteopenia 22 0 22
Osteoporosis 92 14 106
Ostomy 0 1 1
Ovarian Cancer 6 0 6
Ovarian Cyst 17 0 17
Overactive Bladder (OAB) 10 2 12
Paget's 2 1 3
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 5 2 7
Pancreatitis 13 2 15
Paraganglioma 1 1 2
Paralysis 14 9 23
Parkinson's Disease (PD) 27 39 66
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) 14 1 15
Personality Disorder 14 3 17
Pheochromocytoma (PCC) 2 0 2
Pituitary Tumor 10 1 11
Plantar Fasciitis (PF) 7 0 7
Pneumonia 10 0 10
Poland Syndrome 1 0 1
Polio 4 4 8
Polycystic Ovarian Syndrome (PCOS) 94 2 96
Polycythemia Vera (PV) 8 1 9
Polymyalgia Rheumatica (PMR) 6 0 6
Polymyositis (PM) 5 0 5
Pompe Disease 0 1 1
Popliteal Artery Entrapment Syndrome (PAES) 1 0 1
Porphyria 1 0 1
Post-Polio Syndrome (PPS) 2 0 2
Posttraumatic Stress Disorder (PTSD) 25 1 26
Pre-exposure Prophylaxis (PrEP) 2 0 2
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 2 0 2
Premenstrual Dysphoric Disorder (PMDD) 6 0 6
Primary Immunodeficiency (PID) 6 0 6
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Progressive Supranuclear Palsy (PSP) 0 3 3
Prolactinoma 2 0 2
Prostate Cancer 9 3 12
Protein Deficiency 2 1 3
Proteinuria (Protein in Urine) 1 0 1
Prurigo Nodularis (PN) 3 0 3
Psoriasis 195 15 210
Psoriatic Arthritis (PsA) 40 2 42
Pulmonary Arterial Hypertension (PAH) 10 2 12
Pulmonary Embolism (PE) 20 5 25
Pulmonary Fibrosis (PF) 10 2 12
Pyloric Stenosis (Gastric Outlet Obstruction) 3 0 3
Pyoderma Gangrenosum (PG) 0 1 1
Raynaud's Syndrome 28 1 29
Rectal Cancer (CRC) 1 1 2
Rectocele 5 0 5
Renal Cell Carcinoma (Kidney Cancer, RCC) 10 1 11
Restless Leg Syndrome (RLS) 25 3 28
Retroperitoneal Fibrosis 0 1 1
Rheumatoid Arthritis (RA) 153 23 176
Rickets (Osteomalacia) 1 0 1
Rosacea 4 0 4
Sacroiliac Joint Disease (SI) 2 1 3
Sarcoidosis 10 0 10
Sarcoma 1 0 1
Scheuermann's Kyphosis 5 0 5
Schizencephaly 0 1 1
Schizophrenia 13 18 31
Sciatica 27 1 28
Scleroderma 17 2 19
Scoliosis 64 5 69
Secondary Adrenal insufficiency 1 1 2
Sensory Processing Disorder (SPD) 1 0 1
Sepsis 0 2 2
Shingles (Herpes Zoster) 8 1 9
Short Bowel Syndrome (SBS, Short Gut) 1 0 1
Shoulder Replacement 1 0 1
Sickle Cell Disease (SCD) 4 0 4
Sinusitis 40 1 41
Sjogren's Syndrome (SjS, SS) 40 1 41
Skin Cancer 0 1 1
Skin Cancer- Melanoma 24 2 26
Sleep Apnea (OSA) 62 2 64
Sleep Disorder 43 2 45
Small Intestinal Bacterial Overgrowth (SIBO) 4 0 4
Speech Impairment 1 1 2
Sphincter of Oddi Dysfunction 1 1 2
Spina Bifida (SB) 7 2 9
Spinal Cord 110 7 117
Spinal Muscular Atrophy (SMA) 1 2 3
Squamous Cell Carcinoma (SCC) 3 0 3
Stomach Cancer 1 2 3
Stomach Ulcer 16 2 18
Stroke 34 25 59
Subglottic Stenosis (SGS) 2 0 2
Syncope 3 0 3
Syringomyelia 11 0 11
Tarlov Cysts 3 1 4
Temporomandibular joint (TMJ) 3 0 3
Tendonitis 25 0 25
Testicular Cancer 1 0 1
Thalassemia 17 3 20
Thoracic Outlet Syndrome (TOS) 2 0 2
Throat Cancer 1 1 2
Thrombocytopenia (TCP) 12 2 14
Thyroid Cancer 20 0 20
Thyroid Eye Disease (TED) 3 1 4
Thyroid Nodule 60 2 62
Thyroidectomy 7 1 8
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) 6 0 6
Tuberculosis 2 0 2
Ulcerative Colitis (UC) 44 3 47
Undifferentiated Connective Tissue Disease (UCTD) 24 0 24
Urea Cycle Disorder (UCD) 0 1 1
Urinary Tract Infection (UTI) 8 0 8
Urticaria (Hives) 21 0 21
Uterine Cancer 4 0 4
Uterine Fibroids 41 0 41
Uterine Polyps 9 0 9
Uveitis 2 0 2
VACTERL Syndrome 0 1 1
Vaginismus 1 0 1
Varicose Veins 19 3 22
Vasculitis 22 5 27
Vertigo 16 0 16
Vision Impairment 177 34 211
Vitamin B12 Deficiency 7 0 7
Vitamin D Deficiency 23 2 25
Vitiligo 23 1 24
Vocal Cord Dysfunction (VCD) 2 0 2
Von Willebrand Disease (VWD) 1 1 2
Vulvar Cancer 3 0 3
Vulvodynia 11 0 11
Waldenstrom's Macroglobulinemia (WM, Lymphoplasmacytic Lymphoma) 2 0 2
Wegener's Granulomatosis with Polyangiitis (GPA) 5 1 6
Wheelchair 32 28 60
Spain
Disease/Condition Patients Caregivers Total
Acne 16 1 17
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 1 1 2
Addiction 19 5 24
Addison's Disease (Adrenal insufficiency) 4 0 4
Adenomyosis 1 0 1
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Allergies 187 9 196
Alopecia 7 0 7
Alpha 1 Antitrypsin Deficiency (A1AD) 2 0 2
Alzheimer's Disease (AD) 11 264 275
Amplified Musculoskeletal Pain Syndrome 1 1 2
Amputation 6 5 11
Amyloidosis 1 0 1
Amyotrophic Lateral Sclerosis (ALS) 1 8 9
Anal Cancer 2 1 3
Anemia 69 10 79
Aneurysm 4 2 6
Anhidrosis (Hypohydrosis) 1 0 1
Ankylosing Spondylitis (AS) 22 0 22
Anosmia (loss of smell) 1 0 1
Antiphospholipid Syndrome (APS) 10 1 11
Anxiety 389 38 427
Aortic Disease 4 2 6
Aphasia 0 1 1
Aplastic Anemia (AA) 2 1 3
Arachnoid Cyst 4 0 4
Arteriovenous Malformation (AVM) 2 0 2
Arthrogryposis Multiplex Congenita (AMC) 0 2 2
Asthma 214 24 238
Ataxia 0 2 2
Atrial Fibrillation (AFIB) 8 2 10
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 43 24 67
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 2 1 3
Autism 13 35 48
Autoimmune Disease 7 1 8
Autoimmune Encephalitis (AE) 1 1 2
Avascular Necrosis (AVN, Osteonecrosis) 3 0 3
Barrett's Esophagus 3 0 3
Behcet's Disease (BD) 7 0 7
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 12 3 15
Beta Thalassemia (Cooley s Anemia) 2 1 3
Bile Acid Malabsorption (BAD) 2 0 2
Bipolar 58 14 72
Bladder Cancer 4 3 7
Blood Cancer 2 0 2
Blood Clot 2 2 4
Blood Clotting Disorder 3 2 5
Bone Cancer 2 2 4
Borderline Personality Disorder (BPD) 82 5 87
Brain Aneurysm 9 2 11
Brain Cancer 0 2 2
Brain Damage 3 2 5
Brain Tumor 4 5 9
BRCA Mutation 2 0 2
Breast Cancer (BC) 57 13 70
Breast Cancer in Men 1 6 7
Bronchiectasis 3 0 3
Bronchitis 34 9 43
Bulging Disc 9 0 9
Bursitis 7 0 7
Calcinosis 1 0 1
Cancer 117 72 189
Candidiasis (Yeast Infection) 9 1 10
Carcinoma 3 0 3
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Carpal Tunnel Syndrome (CTS) 29 0 29
Celiac Disease (CCD) 21 3 24
Cellulitis 2 0 2
Central Pain Syndrome (CPS) 1 1 2
Cerebellar Atrophy 1 0 1
Cerebral Cavernous Malformations (CCMs) 1 0 1
Cerebral Palsy (CP) 4 7 11
Cervical Cancer 6 0 6
Cervical Dystonia 3 0 3
Chiari Malformation (CM) 6 1 7
Chronic Fatigue Syndrome (CFS, ME) 108 3 111
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 2 1 3
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 46 16 62
Chronic Pain 154 15 169
Chronic Venous Insufficiency (CVI) 9 8 17
Clubfoot 1 0 1
Cluster Headache 5 0 5
Cognitive Impairment (CI) 2 10 12
Colon Cancer (CRC) 10 16 26
Colon Polyps 8 1 9
Colorectal Cancer (CRC) 1 0 1
Complex Regional Pain Syndrome (CRPS, RSD) 7 0 7
Congenital Adrenal Hyperplasia (CAH) 4 0 4
Constipation 8 1 9
Conversion Disorder (CD) 1 0 1
Coronavirus (COVID-19) 29 4 33
Costochondritis 2 0 2
Craniocervical Instability (CCI) 4 0 4
Crohn's Disease (CD) 30 6 36
Cushing's Disease (CS) 4 1 5
Cystic Fibrosis (CF) 4 1 5
Cytomegalovirus (CMV) 4 0 4
Deep Vein Thrombosis (DVT) 15 8 23
Degenerative Disc Disease (DDD) 19 1 20
Deletion Duplication Syndrome 0 4 4
Depression (MDD) 425 72 497
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 3 2 5
Developmental Delay (DD) 0 12 12
Diabetes (DM) 295 175 470
Disabled 4 5 9
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 8 2 10
Diverticulitis 12 3 15
Down Syndrome (DS) 0 6 6
Dupuytren's Contracture 3 0 3
Dwarfism 1 0 1
Dysarthria (Slurred Speech) 1 1 2
Dysautonomia 5 1 6
Dyslexia 4 2 6
Dysmenorrhea (Painful Menstruation) 13 0 13
Dysphagia (Difficulty Swallowing) 4 5 9
Dystonia 0 1 1
Eating Disorder 49 1 50
Eczema (Atopic Dermatitis) 70 11 81
Edema 3 2 5
Ehlers-Danlos Syndrome (EDS) 9 0 9
Elephantiasis (Lymphatic Filariasis) 0 1 1
Empty Sella Syndrome (ESS) 1 0 1
Encephalocele 1 0 1
Endometrial Cancer 2 1 3
Endometriosis 53 0 53
Enlarged Spleen (Splenomegaly) 1 0 1
Eosinophilic Esophagitis (EOE) 3 0 3
Eosinophilic Gasteroenteritis (EG) 1 0 1
Epicondylitis (Tennis Elbow) 6 0 6
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 75 72 147
Erectile Dysfunction (ED) 2 0 2
Erythema Nodosum 1 0 1
Esophageal Cancer 0 1 1
Essential Thrombocythemia 0 1 1
Essential Tremor 3 0 3
Familial Hypercholesterolemia (FH) 21 5 26
Feeding Tubes 0 2 2
Fibrocystic Breasts 4 0 4
Fibrodysplasia Ossificans Progressiva (FOP) 1 1 2
Fibromuscular Dysplasia (FMD) 2 0 2
Fibromyalgia (FM) 390 22 412
Fibrous Dysplasia 2 0 2
Fistula 9 0 9
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 5 0 5
Gastric Bypass 2 0 2
Gastric Dysmotility 1 0 1
Gastritis 44 1 45
Gastroesophageal Reflux Disease (GERD) 26 2 28
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 2 0 2
Gaucher Disease (GD) 1 0 1
Gender Dysphoria 1 0 1
Gluten Intolerance 10 0 10
Glycogen Storage Disease (GSD) 0 1 1
Goiter 1 0 1
Gout 6 3 9
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) 25 1 26
Head and Neck Cancer 0 1 1
Headache 55 7 62
Hearing Aid 2 1 3
Hearing Loss 42 13 55
Heart Disease 110 90 200
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 4 1 5
Hemorrhoids 6 1 7
Hepatitis 17 5 22
Hereditary Angioedema (HAE) 2 1 3
Hereditary Spastic Paraparesis (HSP) 2 0 2
Hernia 122 8 130
Herpes (HSV) 6 2 8
Hidradenitis Suppurativa (HS) 7 2 9
High Blood Pressure (Hypertension, HBP) 318 119 437
High Cholesterol (Hyperlipidemia) 119 36 155
Hip Dysplasia 6 3 9
Hip Replacement 3 4 7
Hirsutism 4 0 4
HIV 50 1 51
Hodgkins Lymphoma 1 0 1
Holoprosencephaly (HPE) 1 0 1
Human Growth Hormone Deficiency (GHD) 4 0 4
Human Papillomavirus (Human Papillomavirus (HPV) 20 0 20
Huntington's Disease (HD) 1 1 2
Hydrocephalus 3 7 10
Hypereosinophilic Syndrome (HES) 0 1 1
Hyperhidrosis 11 0 11
Hypermobility Syndrome 7 0 7
Hyperparathyroidism 10 0 10
Hypersomnia 6 2 8
Hyperthyroidism 46 7 53
Hypocalcemia 4 0 4
Hypoglycemia (Low Blood Sugar) 9 4 13
Hypokalemia 1 1 2
Hypoparathyroidism 3 0 3
Hypothyroidism 211 14 225
Hypotonia 0 5 5
Hypoxic Ischemic Encephalopathy (HIE) 2 0 2
Hysterectomy 6 0 6
Ichthyosis 0 1 1
Immune Thrombocytopenic Purpura (ITP) 1 2 3
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 17 7 24
Infertility 3 0 3
Insomnia 67 2 69
Intellectual Disability 1 10 11
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) 8 1 9
Irritable Bowel Syndrome (IBS) 93 4 97
Juvenile Arthritis (JA) 5 0 5
Keratosis Pilaris (follicular keratosis) 1 1 2
Kidney Disease 46 27 73
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 11 8 19
Lactose Intolerance 19 0 19
Lambert-Eaton myasthenic syndrome (LEMS) 1 0 1
Langerhans Cell Histiocytosis (LCH) 1 0 1
Learning Disability 1 1 2
Leukemia 9 4 13
Leukocytosis 2 1 3
Leukodystrophy 0 1 1
Leukopenia 2 0 2
Lichen Planus 5 0 5
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) 35 5 40
Loin Pain Hematuria Syndrome (LPHS) 10 1 11
Loss of Mobility 13 23 36
Low Blood Pressure (Hypotension) 11 2 13
Low Testosterone 2 0 2
Lung Cancer 10 6 16
Lung Disease 24 9 33
Lupus 50 5 55
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 2 3 5
Mastocytosis (Mast Cell Activating Disease, MCAD) 4 0 4
Median arcuate ligament syndrome (MALS) 1 1 2
Memory Loss 9 12 21
Meniere's Disease (MD) 7 0 7
Menopause 17 0 17
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 4 0 4
Mental Illness 10 10 20
Mesothelioma 1 1 2
Metabolic Syndrome 1 0 1
Metatarsalgia 1 0 1
Microcephaly 0 1 1
Migraine 264 11 275
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 22 4 26
Mucopolysaccharidoses (MPS) 0 1 1
Multiple Endocrine Neoplasia (MEN) 1 0 1
Multiple Myeloma (MM) 4 5 9
Multiple Sclerosis (MS) 71 20 91
Muscle Spasms 5 1 6
Muscular Dystrophy (MD) 8 2 10
Myasthenia Gravis (MG) 8 1 9
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 0 1 1
Myelodysplastic syndrome (MDS) 2 0 2
Myelofibrosis 2 0 2
Myopathy 4 0 4
Myositis 1 0 1
Narcolepsy 5 2 7
Neck Cancer 0 1 1
Neuralgia 21 1 22
Neuroendocrine Cancer (NET) 1 0 1
Neurofibromatosis (NF) 8 1 9
Neurogenic Bladder 4 2 6
Neuropathy 28 4 32
Neutropenia 0 1 1
Non-Hodgkin's Lymphoma (NHL) 4 2 6
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 1 2 3
Obesity 121 24 145
Obsessive Compulsive Disorder (OCD) 30 6 36
Oppositional Defiant Disorder (ODD) 1 1 2
Oral Cancer 1 1 2
Organ Transplant 7 5 12
Organic Acidemia (OA) 1 0 1
Osteoarthritis (OA) 221 57 278
Osteomyelitis (OM) 1 0 1
Osteopenia 10 0 10
Osteoporosis 47 19 66
Ovarian Cancer 9 3 12
Ovarian Cyst 11 1 12
Overactive Bladder (OAB) 8 1 9
Paget's 2 0 2
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 4 0 4
Pancreatitis 10 0 10
Paralysis 7 17 24
Parkinson's Disease (PD) 17 58 75
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
Periodic Limb Movement Disorder (PLMD) 1 0 1
Periodontitis (Gum Disease) 5 1 6
Periventricular Leukomalacia (PVL) 1 0 1
Persistent Genital Arousal Disorder 1 0 1
Personality Disorder 24 5 29
Pituitary Tumor 4 0 4
Plantar Fasciitis (PF) 13 0 13
Pneumonia 8 3 11
Polio 4 1 5
Polycystic Ovarian Syndrome (PCOS) 34 1 35
Polycythemia Vera (PV) 0 1 1
Polymyalgia Rheumatica (PMR) 5 2 7
Post-Polio Syndrome (PPS) 2 1 3
Posttraumatic Stress Disorder (PTSD) 15 3 18
Pre-exposure Prophylaxis (PrEP) 1 1 2
Precocious Puberty 1 0 1
Premenstrual Dysphoric Disorder (PMDD) 4 0 4
Primary Immunodeficiency (PID) 1 3 4
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Progressive Supranuclear Palsy (PSP) 0 1 1
Prolactinoma 1 0 1
Prostate Cancer 10 5 15
Protein Deficiency 1 0 1
Proteinuria (Protein in Urine) 0 1 1
Prurigo Nodularis (PN) 1 0 1
Psoriasis 76 10 86
Psoriatic Arthritis (PsA) 17 1 18
Ptosis (Drooping eye, Blepharoptosis) 2 1 3
Pulmonary Arterial Hypertension (PAH) 9 2 11
Pulmonary Embolism (PE) 6 5 11
Pulmonary Fibrosis (PF) 6 2 8
Raynaud's Syndrome 25 1 26
Rectal Cancer (CRC) 0 2 2
Renal Cell Carcinoma (Kidney Cancer, RCC) 2 1 3
Respiratory Syncytial Virus (RSV) Infection 0 1 1
Restless Leg Syndrome (RLS) 24 0 24
Retroperitoneal Fibrosis 1 0 1
Rheumatoid Arthritis (RA) 144 32 176
Rosacea 5 0 5
Sacroiliac Joint Disease (SI) 2 0 2
Sarcoidosis 7 1 8
Sarcoma 1 0 1
Scheuermann's Kyphosis 5 0 5
Schizophrenia 21 25 46
Sciatica 24 1 25
Scleroderma 10 0 10
Scoliosis 77 8 85
Secondary Adrenal insufficiency 7 3 10
Sensory Processing Disorder (SPD) 2 0 2
Shingles (Herpes Zoster) 3 0 3
Short Bowel Syndrome (SBS, Short Gut) 1 0 1
Sinusitis 16 1 17
Sjogren's Syndrome (SjS, SS) 14 1 15
Skin Cancer 2 1 3
Skin Cancer- Melanoma 7 1 8
Sleep Apnea (OSA) 46 6 52
Sleep Disorder 24 5 29
Small for Gestational Age SGA) 0 1 1
Small Intestinal Bacterial Overgrowth (SIBO) 4 1 5
Spasticity 0 1 1
Speech Impairment 3 2 5
Sphincter of Oddi Dysfunction 0 1 1
Spina Bifida (SB) 10 2 12
Spinal Cord 165 15 180
Spinal Muscular Atrophy (SMA) 4 2 6
Squamous Cell Carcinoma (SCC) 3 0 3
Stomach Cancer 1 2 3
Stomach Ulcer 6 2 8
Stroke 33 36 69
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) 8 1 9
Tendonitis 37 0 37
Thalassemia 6 1 7
Throat Cancer 1 0 1
Thrombocytopenia (TCP) 2 0 2
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 10 3 13
Thyroid Eye Disease (TED) 2 0 2
Thyroid Nodule 12 0 12
Tics 1 1 2
Torticollis (Wry Neck) 1 0 1
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) 2 0 2
Trigger Finger (Stenosing Tenosynovitis) 2 0 2
Tuberculosis 2 0 2
Ulcerative Colitis (UC) 19 2 21
Urinary Tract Infection (UTI) 6 6 12
Urticaria (Hives) 9 1 10
Usher Syndrome 2 0 2
Uterine Cancer 7 0 7
Uterine Fibroids 6 0 6
Uterine Polyps 1 0 1
Uveitis 1 0 1
Vaginismus 1 0 1
Varicose Veins 17 4 21
Vasculitis 3 0 3
Velopharyngeal Insufficiency (VPI) 1 0 1
Vertigo 17 5 22
Vision Impairment 83 37 120
Vitamin B12 Deficiency 5 0 5
Vitamin D Deficiency 12 0 12
Vitiligo 5 1 6
Vocal Cord Dysfunction (VCD) 2 0 2
Von Willebrand Disease (VWD) 3 0 3
Vulvodynia 2 0 2
Wegener's Granulomatosis with Polyangiitis (GPA) 1 0 1
Wheelchair 11 31 42
Wilson's Disease (hepatolenticular degeneration) 1 0 1

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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Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
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Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
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