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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
    • Healthcare Research Recruitment
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Patient Advocacy Team Outreach
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies & Papers
  • RPV Store

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 46 5 51
Acne 530 22 552
Acoustic Neuroma (Vestibula Schwannoma) 24 5 29
Acromegaly 29 6 35
Adams-Oliver Syndrome (AOS) 1 3 4
Addiction 1037 99 1136
Addison's Disease (Adrenal insufficiency) 293 72 365
Adenomyosis 144 1 145
Adhesive Capsulitis (Frozen Shoulder) 41 7 48
Adrenal Cortical Carcinoma (ACC) 8 3 11
Agenesis of the Corpus Callosum (ACC) 11 40 51
Aicardi Syndrome 1 50 51
Alagille Syndrome (AS) 4 11 15
Albinism 22 22 44
Alkaptonuria 5 1 6
Allergies 2613 509 3122
Alopecia 206 24 230
Alpha 1 Antitrypsin Deficiency (A1AD) 136 22 158
Alternating Hemiplegia of Childhood (AHC) 0 3 3
Alzheimer's Disease (AD) 131 1737 1868
Amniotic Band Syndrome 4 0 4
Amplified Musculoskeletal Pain Syndrome 51 10 61
Amputation 148 86 234
Amyloidosis 33 11 44
Amyotrophic Lateral Sclerosis (ALS) 137 146 283
Anal Cancer 88 6 94
Anemia 2287 165 2452
Aneurysm 62 21 83
Anhidrosis (Hypohydrosis) 7 4 11
Ankylosing Spondylitis (AS) 679 46 725
Anosmia (loss of smell) 17 1 18
Anoxic Brain Injury 12 22 34
Antiphospholipid Syndrome (APS) 185 9 194
Antisynthetase Syndrome 10 0 10
Anxiety 14654 1156 15810
Aortic Disease 133 47 180
Aphantasia 8 1 9
Aphasia 27 26 53
Aplastic Anemia (AA) 123 67 190
Appendix Cancer 15 0 15
Apraxia 8 77 85
Arachnoid Cyst 25 10 35
Arachnoiditis 37 3 40
Arteriovenous Malformation (AVM) 44 15 59
Arthrogryposis Multiplex Congenita (AMC) 33 42 75
Aspirin-like defect (ALD) 1 1 2
Asthma 6082 1058 7140
Ataxia 156 91 247
Atrial Fibrillation (AFIB) 499 121 620
Atrophic Vaginitis 15 1 16
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 9008 1531 10539
Atypical Hemolytic Uremic Syndrome (aHUS) 118 30 148
Auditory Processing Disorder (APD) 108 31 139
Autism 1489 1999 3488
Autoimmune Disease 1311 108 1419
Autoimmune Encephalitis (AE) 26 15 41
Avascular Necrosis (AVN, Osteonecrosis) 268 32 300
Bardet Biedl Syndrome (BBS) 7 0 7
Barrett's Esophagus 147 11 158
Barth Syndrome (BTHS) 3 9 12
Bartonella 57 4 61
Basal Cell Carcinoma (BCC) 51 9 60
Batten Disease 3 28 31
Beckwith-Wiedemann Syndrome (BWS) 5 5 10
Behcet's Disease (BD) 80 11 91
Bell's Palsy 38 12 50
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 75 21 96
Beta Thalassemia (Cooley s Anemia) 75 17 92
Bile Acid Malabsorption (BAD) 15 0 15
Bile Duct Cancer (Cholangiocarcinoma) 52 6 58
Bipolar 3750 547 4297
Bladder Cancer 107 35 142
Blood Cancer 58 21 79
Blood Clot 227 41 268
Blood Clotting Disorder 196 29 225
Blount's Disease 1 1 2
Bone Cancer 81 29 110
Bone Marrow Transplant (BMT) (Stem Cell Transplant) 35 2 37
Borderline Personality Disorder (BPD) 1056 45 1101
Brain Aneurysm 89 19 108
Brain Cancer 82 72 154
Brain Damage 56 83 139
Brain Tumor 168 92 260
BRCA Mutation 52 0 52
Breast Cancer (BC) 1675 165 1840
Breast Cancer in Men 14 2 16
Breast Implant Illness 9 0 9
Bronchiectasis 95 13 108
Bronchitis 206 20 226
Bronchopulmonary Dysplasia (BPD) 3 17 20
Bulging Disc 314 14 328
Bursitis 163 6 169
Calcinosis 10 1 11
Calciphylaxis 5 3 8
Campomelic Dysplasia 0 2 2
Cancer 5229 1759 6988
Candidiasis (Yeast Infection) 107 8 115
Capillary Lymphatic Venous Malformations (CLVMs) 1 2 3
Carcinoid Cancer 18 1 19
Carcinoma 110 4 114
Cardiofaciocutaneous Syndrome (CFC syndrome) 5 11 16
Carnitine Deficiency 10 10 20
Caroli Disease 2 6 8
Carpal Tunnel Syndrome (CTS) 635 31 666
Castleman Disease (CD) 10 2 12
Catheter 216 88 304
Cauda Equina Syndrome 11 3 14
Celiac Disease (CCD) 846 154 1000
Cellulitis 40 11 51
Central Pain Syndrome (CPS) 32 1 33
Cerebellar Atrophy 3 3 6
Cerebral Amyloid Angiopathy 1 2 3
Cerebral Cavernous Malformations (CCMs) 12 4 16
Cerebral Palsy (CP) 302 766 1068
Cervical Cancer 142 18 160
Cervical Dystonia 85 8 93
Charge Syndrome 2 19 21
Chiari Malformation (CM) 475 123 598
Chilblains (Pernio) 15 1 16
"Chronic Fatigue Syndrome (CFS, ME)" 1377 41 1418
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 197 29 226
Chronic Intestinal Pseudo-obstruction (CIPO) 43 13 56
Chronic obstructive pulmonary disease (COPD) 1437 693 2130
Chronic Pain 3653 309 3962
Chronic Venous Insufficiency (CVI) 90 27 117
Cleft 26 42 68
Clostridium difficile (C Diff) 122 18 140
Clubfoot 27 31 58
Cluster Headache 320 37 357
Coffin-Lowry Syndrome (CLS) 0 1 1
Cognitive Impairment (CI) 103 74 177
Colon Polyps 63 5 68
Colonic Inertia 34 2 36
Color Blind 14 9 23
Colorectal (Colon) Cancer 210 84 294
Complex Regional Pain Syndrome (CRPS, RSD) 476 40 516
Congenital Adrenal Hyperplasia (CAH) 29 14 43
Congenital Central Hypoventilation Syndrome (CCHS) 4 5 9
Congenital Myopathy 17 14 31
Congenital Sucrase-Isomaltase Deficiency (CSID) 14 13 27
Constipation 462 109 571
Conversion Disorder (CD) 34 3 37
Coronavirus (COVID-19) 520 46 566
Cortical Dysplasia 1 11 12
Costochondritis 97 6 103
Cowden Syndrome (CS) 7 4 11
Craniocervical Instability (CCI) 136 7 143
Craniosynostosis 7 28 35
Crohn's Disease (CD) 1956 286 2242
Cushing's Disease (CS) 224 16 240
Cyclic Vomiting Syndrome (CVS) 310 109 419
Cystic Fibrosis (CF) 868 1000 1868
Cystic Hygroma 0 2 2
Cystinosis 5 3 8
Cytomegalovirus (CMV) 33 16 49
Dandy Walker Syndrome (DWS) 9 23 32
Danon Disease 4 0 4
Darier Disease (DD Keratosis Follicularis) 5 1 6
Deep Vein Thrombosis (DVT) 218 21 239
Degenerative Disc Disease (DDD) 1626 120 1746
Deletion Duplication Syndrome 40 316 356
Delta-Storage Pool Deficiency 5 4 9
Depression (MDD) 14223 1036 15259
Dercum's Disease (adiposis dolorosa) 24 1 25
Dermatomyositis (DM) 122 16 138
Desmoid Tumor 43 5 48
Developmental Delay (DD) 68 504 572
Diabetes (DM) 7200 2759 9959
Disabled 78 56 134
Disruptive Mood Dysregulation Disorder (DMDD) 25 35 60
"Dissociative Identity Disorder (DID, Multiple Personality Disorder)" 208 12 220
Diverticulitis 308 33 341
Down Syndrome (DS) 12 198 210
Dry Mouth 75 3 78
Duodenitis 11 1 12
Dupuytren's Contracture 33 4 37
Dwarfism 42 73 115
Dysarthria (Slurred Speech) 18 16 34
Dysautonomia 2823 180 3003
Dyskeratosis Congenita 1 3 4
Dyslexia 193 45 238
Dysmenorrhea (Painful Menstruation) 222 9 231
Dysphagia (Difficulty Swallowing) 174 75 249
Dystonia 137 52 189
Ear Cancer 2 1 3
Eating Disorder 650 51 701
Eczema (Atopic Dermatitis) 1437 203 1640
Edema 144 34 178
Ehlers-Danlos Syndrome (EDS) 2689 226 2915
Elephantiasis (Lymphatic Filariasis) 5 4 9
Empty Sella Syndrome (ESS) 28 1 29
Encephalitis 18 14 32
Encephalocele 2 4 6
Endometrial Cancer 67 10 77
Endometriosis 1713 45 1758
Enlarged Spleen (Splenomegaly) 25 2 27
Eosinophilic Colitis (EC) 21 7 28
Eosinophilic Esophagitis (EOE) 373 285 658
Eosinophilic Gasteroenteritis (EG) 56 19 75
Epicondylitis (Tennis Elbow) 23 0 23
Epidermolysis Bullosa (EB) 11 8 19
Epilepsy 1717 2495 4212
Epithelial Basement Membrane Dystrophy 8 1 9
Epstein Barr Syndrome (EBV) 181 7 188
Erb's Palsy 4 4 8
Erectile Dysfunction (ED) 98 14 112
Erythema Nodosum 12 0 12
Erythromelalgia 48 2 50
Esophageal Atresia (EA) 5 17 22
Esophageal Cancer 16 18 34
Esophageal Varices 13 3 16
Essential Thrombocythemia 31 3 34
Essential Tremor 188 25 213
Ewing's Sarcoma 24 4 28
Exocrine Pancreatic Insufficiency (EPI) 86 11 97
Eye Cancer 15 10 25
Fabry disease 260 44 304
Failure to Thrive (FTT) 22 66 88
Familial Adenomatous Polyposis (FAP) 59 10 69
Familial Hypercholesterolemia (FH) 51 11 62
Familial Mediterranean Fever (FMF) 12 5 17
Fatty Oxidation Disorder (FAOD) 31 73 104
Feeding Tubes 347 364 711
Fetal Alcohol Syndrome (FAS) 10 29 39
Fibrocystic Breasts 118 6 124
Fibrodysplasia Ossificans Progressiva (FOP) 11 6 17
Fibromuscular Dysplasia (FMD) 28 5 33
Fibromyalgia (FM) 4918 248 5166
Fibrosing Mediastinitis 8 1 9
Fibrous Dysplasia 21 4 25
Fistula 72 12 84
Foot Drop 86 7 93
FOXG1 Syndrome 1 33 34
Fragile X Syndrome (FXS) 22 66 88
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) 6 3 9
Friedreich's Ataxia (FA) 28 27 55
Functional Neurological Disorder (FND) 153 23 176
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 16 3 19
Galactosemia 1 5 6
Gall Stones 165 8 173
Ganglioneuroblastoma 3 3 6
Gastric Bypass 136 9 145
Gastric Dysmotility 281 25 306
Gastritis 416 31 447
Gastroesophageal Reflux Disease (GERD) 3053 364 3417
Gastrointestinal Stromal Tumor (GIST) 21 6 27
Gastroparesis (GP) 1597 155 1752
Gastroschisis 18 13 31
Gaucher Disease (GD) 77 35 112
Gender Dysphoria 168 3 171
Giant Cell Arteritis (GCA) 14 2 16
Glucose Transporter Deficiency (GLUT1DS) 1 4 5
Gluten Intolerance 153 11 164
Glycogen Storage Disease (GSD) 18 11 29
Goiter 50 2 52
Goldenhar Syndrome 4 7 11
Gout 263 70 333
Graft Versus Host Disease (GVHD) 63 12 75
Granular Cell Tumors 8 0 8
Granuloma Annulare (GA) 30 1 31
Grave's Disease (GD) 377 25 402
Guillain-Barre Syndrome (GBS) 96 10 106
Hansen's Disease (Leprosy) 2 1 3
Hashimoto's Disease (HT) 1817 69 1886
Head and Neck Cancer 37 9 46
Headache 642 45 687
Hearing Aid 226 172 398
Hearing Loss 764 336 1100
Heart Disease 2902 1440 4342
HELLP Syndrome 8 0 8
Hemangioma 20 10 30
Hemihyperplasia 5 7 12
Hemochromatosis (Iron Overload) 125 21 146
Hemolytic Disease of the Fetus and Newborn (HDFN) 0 3 3
Hemophilia 1007 1061 2068
Hemorrhoids 145 6 151
Hepatitis 664 107 771
Hereditary alpha-tryptasemia (H?T) 24 5 29
Hereditary Angioedema (HAE) 84 12 96
Hereditary hemorrhagic telangiectasia (HHT) 24 7 31
Hereditary Spastic Paraparesis (HSP) 74 17 91
Hereditary Spastic Paraplegia (HSP) 78 24 102
Hernia 430 43 473
Herpes (HSV) 380 12 392
Hidradenitis Suppurativa (HS) 1444 29 1473
High Blood Pressure (Hypertension, HBP) 6690 1253 7943
High Cholesterol (Hyperlipidemia) 2863 435 3298
Hip Dysplasia 126 51 177
Hip Replacement 156 38 194
Hirschsprung's Disease (HD, HSCR) 12 48 60
Hirsutism 50 0 50
HIV 1155 129 1284
Hodgkins Lymphoma 134 13 147
Holoprosencephaly (HPE) 0 11 11
Homocystinuria (HCU) 5 8 13
Horner Syndrome 12 4 16
Human Growth Hormone Deficiency (GHD) 170 236 406
Human Papillomavirus (Human Papillomavirus (HPV) 201 5 206
Huntington's Disease (HD) 243 348 591
Hydrocephalus 181 229 410
Hyper-IgA Syndrome 3 1 4
Hyperaldosteronism 9 0 9
Hyperemesis Gravidarum (HG, Morning Sickness) 26 3 29
Hypereosinophilic Syndrome (HES) 21 4 25
Hyperhidrosis 176 4 180
Hyperkalemia 28 4 32
Hypermobility Syndrome 543 38 581
Hyperoxaluria 2 1 3
Hyperparathyroidism 182 20 202
Hypersomnia 258 5 263
Hyperthyroidism 330 22 352
Hypocalcemia 32 3 35
Hypoglycemia (Low Blood Sugar) 455 54 509
Hypohidrotic Ectodermal Dysplasia (HED) 5 9 14
Hypokalemia 123 11 134
Hypokalemic Periodic Paralysis 35 10 45
Hyponatremia 24 3 27
Hypoparathyroidism 187 27 214
Hypophosphatasia (HPP) 21 4 25
Hypoplasia of the Corpus Callosum 3 5 8
Hypothyroidism 3488 250 3738
Hypotonia 29 176 205
Hypoxic Ischemic Encephalopathy (HIE) 7 55 62
Hysterectomy 259 7 266
Ichthyosis 14 6 20
IgG 4 related disease (IgG4-RD) 62 4 66
Immune Thrombocytopenic Purpura (ITP) 174 19 193
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 21 4 25
Incontinence 286 94 380
Incontinentia Pigmenti (IP) 5 24 29
Infertility 189 5 194
Insomnia 1587 95 1682
Intellectual Disability 47 222 269
Intermittent Explosive Disorder (IED) 23 11 34
Interstitial Cystitis (IC) 479 18 497
Interstitial Lung Disease (ILD) 163 27 190
Intracranial Hemorrhage (Brain Bleeds) 20 14 34
"Intracranial Hypertension (IH, Pseudotumor Cerebri)" 348 26 374
intracranial Pressure (ICP) 10 2 12
Iritis 40 2 42
Irritable Bowel Syndrome (IBS) 2845 136 2981
Ischemic Colitis 9 0 9
Jansen's Metaphyseal Chondrodysplasia 2 1 3
Juvenile Arthritis (JA) 265 186 451
Kabuki Syndrome 1 5 6
Kaposi Sarcoma (KS) 4 1 5
Kawasaki Disease 6 7 13
Keratosis Pilaris (follicular keratosis) 76 5 81
Kidney Disease 1982 709 2691
Klinefelter Syndrome (XXY Syndrome) 6 3 9
Klippel-Feil Syndrome (KFS) 13 9 22
Klippel-Trenaunay Syndrome (KTS) 9 3 12
Knee Replacement 162 32 194
Lactose Intolerance 181 17 198
Lamb-Shaffer Syndrome 0 2 2
Lambert-Eaton myasthenic syndrome (LEMS) 27 2 29
Landau Kleffner Syndrome (LKS) 2 6 8
Langerhans Cell Histiocytosis (LCH) 13 9 22
Larsen syndrome 4 2 6
Laryngeal Cancer 1 2 3
Laryngomalacia 3 30 33
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 6 15 21
Learning Disability 145 114 259
Legg-Calve-Perthes Disease (LCPD) 13 13 26
Leiomyosarcoma 14 0 14
LEOPARD Syndrome 3 1 4
Leukemia 320 123 443
Leukocytosis 28 2 30
Leukodystrophy 19 30 49
Leukopenia 15 4 19
Lichen Planus 54 1 55
Lichen Sclerosis (LS) 112 4 116
Lipedema 61 4 65
Lipodystrophy 8 1 9
Liposarcoma 14 0 14
Lissencephaly 0 32 32
Livedo Reticularis (LR) 26 1 27
Liver Cancer 64 46 110
Liver Disease (not hepatitis) 839 204 1043
Loeys Dietz Syndrome 9 6 15
Loin Pain Hematuria Syndrome (LPHS) 16 0 16
Loss of Mobility 71 67 138
Low Blood Pressure (Hypotension) 527 28 555
Low Testosterone 88 7 95
Lung Cancer 410 221 631
Lung Disease 304 180 484
Lupus 3517 269 3786
Lyme Disease 498 33 531
Lymphedema 287 31 318
Lymphocytic Colitis 36 3 39
Lymphoma 86 25 111
Lymphoproliferative Disease (LPD) 8 6 14
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 25 3 28
Macular Degeneration 184 56 240
Macular Telangiectasia (MacTel) 15 6 21
Mal de debarquement Syndrome (MdDS) 7 0 7
Malabsorption 85 5 90
Malignant Hyperthermia (MH) 10 3 13
Maple Syrup Urine Disease (MSUD) 6 12 18
Marfan Syndrome (MFS) 53 14 67
Mastocytosis (Mast Cell Activating Disease, MCAD) 1030 77 1107
May Thurner Syndrome 64 1 65
Mayer-Rokitansky-K ster-Hauser (MRKH) syndrome 12 0 12
McCune-Albright Syndrome (MAS) 11 3 14
Median arcuate ligament syndrome (MALS) 152 3 155
Memory Loss 145 95 240
Meniere's Disease (MD) 139 11 150
Menopause 212 8 220
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 168 7 175
Mental Illness 259 104 363
Mesothelioma 4 7 11
Metabolic Syndrome 75 20 95
Metatarsalgia 7 0 7
Methicillin-Resistant Staphylococcus Aureus (MRSA) 73 7 80
Microcephaly 4 80 84
Microscopic Colitis 34 2 36
Microtia 5 33 38
Migraine 5690 292 5982
Misophonia 15 1 16
Mitochondrial Disease 138 105 243
Mixed Connective Tissue Disease (MCTD) 356 12 368
Moebius Syndrome 5 5 10
Monoclonal gammopathy of undetermined significance (MGUS) 45 5 50
Mood Disorder 220 60 280
Morgellons Disease (MD) 14 2 16
Moyamoya Disease 15 11 26
MTHFR 194 18 212
Mucopolysaccharidoses (MPS) 10 50 60
Multiple Endocrine Neoplasia (MEN) 13 4 17
Multiple Myeloma (MM) 230 58 288
Multiple Sclerosis (MS) 6116 692 6808
Multiple System Atrophy (MSA) 13 13 26
Muscle Spasms 167 22 189
Muscle Tension Dysphonia (MTD) 19 1 20
Muscular Dystrophy (MD) 469 577 1046
Myasthenia Gravis (MG) 825 113 938
Mycobacterium Avium Complex (MAC) 8 1 9
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 33 8 41
Myelodysplastic syndrome (MDS) 133 42 175
Myelofibrosis 42 3 45
Myeloproliferative Neoplasms 12 2 14
Myopathy 88 26 114
Myositis 61 9 70
Narcolepsy 923 51 974
Nasal Polyps 135 11 146
Nasopharyngeal Carcinoma (NPC) 2 2 4
Neck Cancer 5 6 11
Neck Surgery 28 7 35
Neuralgia 405 16 421
Neuroblastoma 2 31 33
Neuroendocrine Cancer (NET) 67 3 70
Neurofibromatosis (NF) 111 37 148
Neurogenic Bladder 253 69 322
Neurogenic Bowel 46 19 65
Neuromyelitis optica (NMO) 349 48 397
Neuropathy 2525 230 2755
Neurotrophic Keratitis 7 0 7
Neutropenia 41 48 89
Niemann-Pick Disease 7 8 15
Non-Hodgkin's Lymphoma (NHL) 227 33 260
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 79 3 82
Nonspecific Interstitial Pneumonia (NSIP) 14 0 14
Nontuberculous Mycobacterial (NTM) 11 2 13
Noonan Syndrome (NS) 6 7 13
Obesity 1967 123 2090
Obsessive Compulsive Disorder (OCD) 1608 188 1796
Oppositional Defiant Disorder (ODD) 85 183 268
Oral Cancer 8 6 14
Organ Transplant 405 126 531
Organic Acidemia (OA) 8 51 59
Osteoarthritis (OA) 3389 376 3765
Osteogenesis Imperfecta (OI) 79 49 128
Osteomyelitis (OM) 38 15 53
Osteopenia 356 36 392
Osteoporosis 789 113 902
Ostomy 314 79 393
Ovarian Cancer 286 28 314
Ovarian Cyst 330 9 339
Overactive Bladder (OAB) 318 29 347
Paget's 8 0 8
Palmoplantar Pustulosis 7 0 7
Pancreatic Cancer 42 41 83
Pancreatitis 244 33 277
Paraganglioma 5 2 7
Paralysis 300 230 530
Paraneoplastic Syndrome 8 5 13
Parkinson's Disease (PD) 551 498 1049
Paroxysmal Nocturnal Hemoglobinuria (PNH) 180 43 223
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 47 51 98
Pelvic Congestion Syndrome (PCS) 46 3 49
Pelvic Floor Dysfunction 238 8 246
Pelvic Inflammatory Disease (PID) 27 2 29
Pemphigus / Pemphigoid 218 30 248
Pendred Syndrome 1 2 3
Periodic Limb Movement Disorder (PLMD) 44 7 51
Periodontitis (Gum Disease) 96 5 101
Perivascular Epithelioid Cell Tumour (PEComas) 2 0 2
Periventricular Leukomalacia (PVL) 2 24 26
Persistent Genital Arousal Disorder 5 0 5
Personality Disorder 81 8 89
Peyronie's Disease (Penile Fibrosis) 19 1 20
Pfeiffer Syndrome 0 3 3
Phenylketonuria (PKU) 61 125 186
Pheochromocytoma (PCC) 24 2 26
Pierre Robin Sequence (PRS) 4 26 30
Pituitary Tumor 157 12 169
Plagiocephaly (Flat Head Syndrome) 0 6 6
Plantar Fasciitis (PF) 280 6 286
Pneumonia 110 19 129
Poland Syndrome 6 3 9
Polio 15 14 29
Polychrondritis 58 5 63
Polycystic Ovarian Syndrome (PCOS) 2207 67 2274
Polycythemia Vera (PV) 137 5 142
Polymicrogyria (PMG) 3 28 31
Polymyalgia Rheumatica (PMR) 42 3 45
Polymyositis (PM) 70 4 74
Pompe Disease 29 34 63
Popliteal Artery Entrapment Syndrome (PAES) 3 1 4
Porphyria 32 6 38
Post-Polio Syndrome (PPS) 27 7 34
Posttraumatic Stress Disorder (PTSD) 5677 423 6100
Pre-exposure Prophylaxis (PrEP) 42 4 46
Precocious Puberty 7 14 21
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 28 0 28
Premenstrual Dysphoric Disorder (PMDD) 409 5 414
Primary Ciliary Dyskinesia (PCD) 8 10 18
Primary Hyperoxaluria (PH) 6 10 16
Primary Immunodeficiency (PID) 518 128 646
Primary Peritoneal 7 0 7
Progressive Multifocal Leukoencephalopathy (PML) 4 2 6
Progressive Supranuclear Palsy (PSP) 16 13 29
Prolactinoma 28 0 28
Prostate Cancer 145 93 238
Protein Deficiency 26 7 33
Proteinuria (Protein in Urine) 18 4 22
Prurigo Nodularis (PN) 24 1 25
Pseudobulbar Affect (PBA) 15 4 19
Psoriasis 1445 95 1540
Psoriatic Arthritis (PsA) 904 68 972
Ptosis (Drooping eye, Blepharoptosis) 25 5 30
Pulmonary Arterial Hypertension (PAH) 1049 251 1300
Pulmonary Embolism (PE) 189 21 210
Pulmonary Fibrosis (PF) 192 46 238
Pyloric Stenosis (Gastric Outlet Obstruction) 21 8 29
Pyoderma Gangrenosum (PG) 26 1 27
Pyruvate Kinase Deficiency (PKD) 9 3 12
Raynaud's Syndrome 1200 46 1246
Rectal Cancer (CRC) 40 8 48
Rectocele 21 0 21
Renal Cell Carcinoma (Kidney Cancer, RCC) 115 47 162
Respiratory Disease 5 8 13
Respiratory Syncytial Virus (RSV) Infection 6 8 14
Restless Leg Syndrome (RLS) 677 54 731
Retroperitoneal Fibrosis 7 3 10
Rheumatoid Arthritis (RA) 3260 398 3658
Rickets (Osteomalacia) 7 2 9
Rocky Mountain Spotted Fever (RMSF) 16 2 18
Rosacea 220 4 224
Rubella- German Measles 2 0 2
Sacroiliac Joint Disease (SI) 102 3 105
Sarcoidosis 263 32 295
Sarcoma 91 17 108
Schamberg's Disease 4 0 4
Scheuermann's Kyphosis 40 13 53
Schinzel-Giedion Syndrome (SGS) 0 3 3
Schizencephaly 2 26 28
Schizophrenia* 506 289 795
Sciatica 504 29 533
Scleroderma 396 41 437
Sclerosing Peritonitis (SP) 4 1 5
Scoliosis 1165 215 1380
Secondary Adrenal insufficiency 147 21 168
Secondary Immune Deficiency (SID) 194 11 205
Sensory Processing Disorder (SPD) 202 269 471
Sepsis 70 13 83
Sexually Transmitted Disease 35 2 37
Shaken Baby Syndrome (SBS) 2 13 15
Shingles (Herpes Zoster) 124 20 144
"Short Bowel Syndrome (SBS, Short Gut)" 116 50 166
Shoulder Replacement 15 1 16
Sickle Cell Disease (SCD): Sickle Cell Trait 89 27 116
Sickle Cell Disease (SCD)* 1077 477 1554
Sinusitis 391 35 426
Sjogren's Syndrome (SjS, SS) 1099 41 1140
Skin Cancer 430 89 519
Sleep Apnea (OSA) 1919 302 2221
Sleep Disorder 435 80 515
Small for Gestational Age SGA) 4 9 13
Small Intestinal Bacterial Overgrowth (SIBO) 180 9 189
Smith-Lemli-Opitz Syndrome (SLOS) 1 6 7
Sotos Syndrome 1 9 10
Spasmodic Dysphonia 19 0 19
Spastic Diplegia 12 14 26
Spasticity 69 47 116
Speech Impairment 63 125 188
Spherocytosis 15 8 23
Sphincter of Oddi Dysfunction 20 4 24
Spina Bifida (SB) 185 160 345
Spinal Cancer 7 6 13
Spinal Cord 1345 240 1585
Spinal Muscular Atrophy (SMA) 261 460 721
Sprengel Deformity 3 2 5
Stickler Syndrome 17 15 32
Stiff Person Syndrome (SPS) 28 5 33
Stomach Cancer 37 29 66
Stomach Ulcer 250 31 281
Stroke 570 542 1112
Subcortical Band Heterotopia 0 4 4
Subglottic Stenosis (SGS) 22 11 33
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 108 5 113
Syncope 242 11 253
Synesthesia 16 1 17
Syringomyelia 114 19 133
Tardive Dyskinesia (TD) 84 6 90
Tarlov Cysts 40 0 40
Tay Sachs (TSD) 10 18 28
Temporomandibular joint (TMJ) 538 14 552
Tendonitis 229 10 239
Tenosynovial Giant Cell Tumor (TGCT) 2 0 2
Testicular Cancer 12 6 18
Thalassemia 82 9 91
Thoracic Outlet Syndrome (TOS) 118 4 122
Throat Cancer 17 18 35
Thrombocytopenia (TCP) 56 8 64
Thrombotic Thrombocytopenic Purpura (TTP) 15 2 17
Thyroid Cancer 389 27 416
Thyroid Eye Disease (TED) 98 5 103
Thyroid Nodule 202 6 208
Thyroidectomy 194 11 205
Tics 42 5 47
Tongue Cancer 4 2 6
Tooth Agenesis (Anodontia) 6 1 7
Torticollis (Wry Neck) 5 5 10
Tourette Syndrome (TS) 133 72 205
Townes-Brocks Syndrome 0 1 1
Toxic Synovitis 1 0 1
Tracheobronchomalacia (TBM) 6 8 14
Tracheomalacia 8 19 27
Transient Global Amnesia (TGA) 5 7 12
Traumatic Brain Injury (TBI) 437 203 640
Treacher Collins syndrome (TCS) 3 4 7
Trichotillomania (TTM) 113 8 121
Trigger Finger (Stenosing Tenosynovitis) 42 6 48
Trisomy 13 (Patau Syndrome) 1 6 7
Trisomy 18 (Edwards Syndrome) 1 9 10
Trisomy X (XXX) 16 11 27
Tuberculosis 28 8 36
Ulcerative Colitis (UC) 1137 132 1269
Undifferentiated Connective Tissue Disease (UCTD) 159 7 166
Urea Cycle Disorder (UCD) 36 16 52
Urethral Prolapse 19 3 22
Urinary Tract Infection (UTI) 497 51 548
Urticaria (Hives) 487 31 518
Usher Syndrome 9 6 15
Uterine Cancer 52 13 65
Uterine Fibroids 380 9 389
Uterine Leiomyosarcoma 6 1 7
Uterine Polyps 31 3 34
Uveitis 95 18 113
VACTERL Syndrome 3 6 9
Vaginismus 29 2 31
Valosin Containing Protein (VCP) 9 1 10
Varicose Veins 95 3 98
Vasculitis 138 17 155
Velopharyngeal Insufficiency (VPI) 1 1 2
Vertebral Artery Dissection (VAD) 13 1 14
Vertigo 362 41 403
Vision Impairment 1652 629 2281
Vitamin B12 Deficiency 238 15 253
Vitamin D Deficiency 475 33 508
Vitiligo 141 21 162
Vocal Cord Dysfunction (VCD) 90 17 107
Von Hippel-Lindau Syndrome 5 3 8
Von Willebrand Disease (VWD) 356 166 522
Vulvar Cancer 18 2 20
Vulvodynia 32 1 33
Waldenstrom's Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 181 18 199
Wegener's Granulomatosis with Polyangiitis (GPA) 45 6 51
Wheelchair 2728 2037 4765
Williams Syndrome (WS) 10 35 45
Wilson's Disease (hepatolenticular degeneration) 19 21 40
Wolf-Hirschhorn Syndrome (WHS) 0 5 5
Wolff-Parkinson-White (WPW) Syndrome 54 14 68
X-Linked Hypophosphatemia (XLH) 21 6 27
Zoon vulvitis 1 0 1
Canada
Disease/Condition Patients Caregivers Total
Achalasia 4 0 4
Acne 27 1 28
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 2 0 2
Addiction 36 2 38
Addison's Disease (Adrenal insufficiency) 14 3 17
Adenomyosis 16 0 16
Adhesive Capsulitis (Frozen Shoulder) 5 0 5
Agenesis of the Corpus Callosum (ACC) 2 2 4
Albinism 1 1 2
Allergies 145 15 160
Alopecia 20 0 20
Alpha 1 Antitrypsin Deficiency (A1AD) 4 0 4
Alzheimer's Disease (AD) 0 26 26
Amplified Musculoskeletal Pain Syndrome 3 0 3
Amputation 6 0 6
Amyloidosis 4 0 4
Amyotrophic Lateral Sclerosis (ALS) 4 4 8
Anal Cancer 5 0 5
Anemia 92 0 92
Aneurysm 2 2 4
Anhidrosis (Hypohydrosis) 1 0 1
Ankylosing Spondylitis (AS) 61 4 65
Anosmia (loss of smell) 1 0 1
Anoxic Brain Injury 1 0 1
Antiphospholipid Syndrome (APS) 9 0 9
Anxiety 1044 39 1083
Aortic Disease 9 2 11
Aphasia 3 1 4
Aplastic Anemia (AA) 2 1 3
Appendix Cancer 1 0 1
Apraxia 0 5 5
Arachnoid Cyst 3 2 5
Arachnoiditis 2 0 2
Arteriovenous Malformation (AVM) 1 0 1
Arthrogryposis Multiplex Congenita (AMC) 5 2 7
Asthma 270 19 289
Ataxia 12 2 14
Atrial Fibrillation (AFIB) 10 3 13
"Attention Deficit Hyperactivity Disorder (ADHD, ADD)" 1211 79 1290
Atypical Hemolytic Uremic Syndrome (aHUS) 2 4 6
Auditory Processing Disorder (APD) 15 1 16
Autism 189 66 255
Autoimmune Disease 27 1 28
"Avascular Necrosis (AVN, Osteonecrosis)" 10 1 11
Barrett's Esophagus 0 1 1
Barth Syndrome (BTHS) 0 1 1
Bartonella 1 0 1
Basal Cell Carcinoma (BCC) 2 1 3
Batten Disease 0 3 3
Behcet's Disease (BD) 4 0 4
Bell's Palsy 2 0 2
"Benign Prostatic Hyperplasia (BPH, Enlarged Prostate)" 0 1 1
Beta Thalassemia (Cooley s Anemia) 1 0 1
Bile Acid Malabsorption (BAD) 2 0 2
Bile Duct Cancer (Cholangiocarcinoma) 1 1 2
Bipolar 94 7 101
Bladder Cancer 5 0 5
Blood Cancer 4 2 6
Blood Clot 10 0 10
Blood Clotting Disorder 5 1 6
Bone Cancer 7 1 8
Borderline Personality Disorder (BPD) 137 3 140
Brain Aneurysm 6 1 7
Brain Cancer 1 3 4
Brain Damage 8 2 10
Brain Tumor 6 2 8
BRCA Mutation 2 0 2
Breast Cancer (BC) 66 9 75
Bronchiectasis 2 0 2
Bronchitis 5 0 5
Bulging Disc 18 1 19
Bursitis 14 0 14
Cancer 190 38 228
Candidiasis (Yeast Infection) 4 0 4
Carcinoid Cancer 1 0 1
Carcinoma 1 0 1
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 18 0 18
Castleman Disease (CD) 1 0 1
Catheter 1 1 2
Celiac Disease (CCD) 61 6 67
Central Pain Syndrome (CPS) 3 0 3
Cerebral Palsy (CP) 15 16 31
Cervical Cancer 5 0 5
Cervical Dystonia 3 1 4
Charge Syndrome 0 2 2
Chiari Malformation (CM) 13 6 19
Chilblains (Pernio) 1 0 1
"Chronic Fatigue Syndrome (CFS, ME)" 121 1 122
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 4 1 5
Chronic Intestinal Pseudo-obstruction (CIPO) 4 0 4
Chronic obstructive pulmonary disease (COPD) 46 10 56
Chronic Pain 203 10 213
Chronic Venous Insufficiency (CVI) 4 1 5
Cleft 0 1 1
Clostridium difficile (C Diff) 4 0 4
Clubfoot 2 1 3
Cluster Headache 20 0 20
Cognitive Impairment (CI) 7 2 9
Colon Polyps 3 0 3
Colonic Inertia 3 0 3
Color Blind 4 0 4
Colorectal (Colon) Cancer 4 1 5
"Complex Regional Pain Syndrome (CRPS, RSD)" 38 2 40
Congenital Adrenal Hyperplasia (CAH) 2 0 2
Constipation 21 2 23
Conversion Disorder (CD) 2 0 2
Coronavirus (COVID-19) 23 0 23
Cortical Dysplasia 0 1 1
Costochondritis 9 0 9
Cowden Syndrome (CS) 1 0 1
Craniocervical Instability (CCI) 3 0 3
Craniosynostosis 1 4 5
Crohn's Disease (CD) 194 13 207
Cushing's Disease (CS) 16 1 17
Cyclic Vomiting Syndrome (CVS) 28 9 37
Cystic Fibrosis (CF) 65 31 96
Cystic Hygroma 1 0 1
Cystinosis 0 1 1
Cytomegalovirus (CMV) 0 1 1
Deep Vein Thrombosis (DVT) 9 1 10
Degenerative Disc Disease (DDD) 71 0 71
Deletion Duplication Syndrome 1 15 16
Depression (MDD) 907 28 935
Dermatomyositis (DM) 4 0 4
Desmoid Tumor 1 0 1
Developmental Delay (DD) 6 20 26
Diabetes (DM) 235 47 282
Disabled 6 1 7
Disruptive Mood Dysregulation Disorder (DMDD) 0 1 1
"Dissociative Identity Disorder (DID, Multiple Personality Disorder)" 14 0 14
Diverticulitis 17 1 18
Down Syndrome (DS) 1 7 8
Dry Mouth 3 0 3
Duodenitis 1 0 1
Dupuytren's Contracture 2 0 2
Dwarfism 5 0 5
Dysarthria (Slurred Speech) 1 0 1
Dysautonomia 139 6 145
Dyslexia 20 2 22
Dysmenorrhea (Painful Menstruation) 23 2 25
Dysphagia (Difficulty Swallowing) 10 2 12
Dystonia 5 3 8
Eating Disorder 66 2 68
Eczema (Atopic Dermatitis) 106 4 110
Edema 4 0 4
Ehlers-Danlos Syndrome (EDS) 153 2 155
Encephalitis 3 0 3
Endometrial Cancer 6 0 6
Endometriosis 151 1 152
Enlarged Spleen (Splenomegaly) 1 0 1
Eosinophilic Colitis (EC) 1 0 1
Eosinophilic Esophagitis (EOE) 12 7 19
Eosinophilic Gasteroenteritis (EG) 2 0 2
Epicondylitis (Tennis Elbow) 1 0 1
Epilepsy 63 71 134
Epstein Barr Syndrome (EBV) 6 0 6
Erb's Palsy 2 0 2
Erectile Dysfunction (ED) 4 0 4
Erythema Nodosum 1 0 1
Erythromelalgia 5 0 5
Esophageal Atresia (EA) 0 1 1
Esophageal Cancer 0 1 1
Essential Thrombocythemia 1 0 1
Essential Tremor 9 0 9
Ewing's Sarcoma 2 0 2
Exocrine Pancreatic Insufficiency (EPI) 1 0 1
Eye Cancer 2 1 3
Fabry disease 3 1 4
Failure to Thrive (FTT) 0 3 3
Familial Adenomatous Polyposis (FAP) 6 0 6
Familial Hypercholesterolemia (FH) 1 0 1
Familial Mediterranean Fever (FMF) 2 0 2
Fatty Oxidation Disorder (FAOD) 0 2 2
Feeding Tubes 10 11 21
Fetal Alcohol Syndrome (FAS) 4 6 10
Fibrocystic Breasts 11 0 11
Fibrodysplasia Ossificans Progressiva (FOP) 1 1 2
Fibromuscular Dysplasia (FMD) 2 0 2
Fibromyalgia (FM) 340 4 344
Fibrous Dysplasia 0 1 1
Fistula 3 0 3
Foot Drop 1 0 1
FOXG1 Syndrome 0 2 2
Fragile X Syndrome (FXS) 0 4 4
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) 1 0 1
Friedreich's Ataxia (FA) 4 4 8
Functional Neurological Disorder (FND) 17 1 18
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 0 1 1
Gall Stones 13 0 13
Gastric Bypass 4 0 4
Gastric Dysmotility 16 1 17
Gastritis 18 0 18
Gastroesophageal Reflux Disease (GERD) 118 7 125
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 64 2 66
Gastroschisis 1 0 1
Gaucher Disease (GD) 1 1 2
Gender Dysphoria 15 0 15
Glucose Transporter Deficiency (GLUT1DS) 0 2 2
Gluten Intolerance 12 0 12
Glycogen Storage Disease (GSD) 0 1 1
Gout 13 1 14
Graft Versus Host Disease (GVHD) 4 0 4
Granuloma Annulare (GA) 3 0 3
Grave's Disease (GD) 13 0 13
Guillain-Barre Syndrome (GBS) 8 1 9
Hashimoto's Disease (HT) 83 1 84
Head and Neck Cancer 1 0 1
Headache 40 3 43
Hearing Aid 16 3 19
Hearing Loss 34 7 41
Heart Disease 88 35 123
HELLP Syndrome 2 0 2
Hemangioma 3 1 4
Hemochromatosis (Iron Overload) 9 1 10
Hemophilia 16 13 29
Hemorrhoids 7 0 7
Hepatitis 21 2 23
Hereditary alpha-tryptasemia (H?T) 1 0 1
Hereditary Angioedema (HAE) 9 1 10
Hereditary Spastic Paraparesis (HSP) 9 0 9
Hereditary Spastic Paraplegia (HSP) 6 1 7
Hernia 12 2 14
Herpes (HSV) 11 0 11
Hidradenitis Suppurativa (HS) 76 2 78
"High Blood Pressure (Hypertension, HBP)" 176 27 203
High Cholesterol (Hyperlipidemia) 75 7 82
Hip Dysplasia 10 1 11
Hip Replacement 11 0 11
"Hirschsprung's Disease (HD, HSCR)" 1 5 6
Hirsutism 4 0 4
HIV 7 0 7
Hodgkins Lymphoma 11 3 14
Homocystinuria (HCU) 2 0 2
Human Growth Hormone Deficiency (GHD) 9 8 17
Human Papillomavirus (Human Papillomavirus (HPV) 6 0 6
Huntington's Disease (HD) 3 5 8
Hydrocephalus 11 5 16
Hyperaldosteronism 1 0 1
"Hyperemesis Gravidarum (HG, Morning Sickness)" 1 0 1
Hyperhidrosis 13 0 13
Hypermobility Syndrome 47 2 49
Hyperparathyroidism 8 0 8
Hypersomnia 10 1 11
Hyperthyroidism 17 2 19
Hypocalcemia 1 1 2
Hypoglycemia (Low Blood Sugar) 28 2 30
Hypokalemia 2 0 2
Hyponatremia 1 0 1
Hypoparathyroidism 8 0 8
Hypophosphatasia (HPP) 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 182 1 183
Hypotonia 0 9 9
Hysterectomy 6 0 6
Ichthyosis 1 0 1
IgG 4 related disease (IgG4-RD) 2 1 3
Immune Thrombocytopenic Purpura (ITP) 10 1 11
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 16 7 23
Infertility 21 0 21
Insomnia 73 1 74
Intellectual Disability 2 19 21
Interstitial Cystitis (IC) 25 0 25
Interstitial Lung Disease (ILD) 5 0 5
Intracranial Hemorrhage (Brain Bleeds) 1 0 1
"Intracranial Hypertension (IH, Pseudotumor Cerebri)" 5 2 7
intracranial Pressure (ICP) 1 0 1
Iritis 3 0 3
Irritable Bowel Syndrome (IBS) 264 4 268
Ischemic Colitis 1 0 1
Juvenile Arthritis (JA) 18 11 29
Kawasaki Disease 1 1 2
Keratosis Pilaris (follicular keratosis) 5 0 5
Kidney Disease 81 14 95
Klippel-Feil Syndrome (KFS) 3 0 3
Klippel-Trenaunay Syndrome (KTS) 1 0 1
Knee Replacement 10 1 11
Lactose Intolerance 20 0 20
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 1 1 2
Learning Disability 24 14 38
Legg-Calve-Perthes Disease (LCPD) 2 1 3
Leiomyosarcoma 1 0 1
LEOPARD Syndrome 1 1 2
Leukemia 15 3 18
Leukodystrophy 2 2 4
Lichen Planus 3 0 3
Lichen Sclerosis (LS) 6 0 6
Lipedema 4 0 4
Lipodystrophy 1 0 1
Liposarcoma 2 0 2
Livedo Reticularis (LR) 1 0 1
Liver Cancer 6 0 6
Liver Disease (not hepatitis) 49 4 53
Loeys Dietz Syndrome 1 0 1
Loss of Mobility 11 5 16
Low Blood Pressure (Hypotension) 28 2 30
Low Testosterone 1 1 2
Lung Cancer 16 5 21
Lung Disease 11 2 13
Lupus 157 2 159
Lyme Disease 12 0 12
Lymphedema 14 0 14
Lymphoma 7 0 7
Macular Degeneration 4 3 7
Mal de debarquement Syndrome (MdDS) 1 0 1
Malabsorption 2 0 2
Malignant Hyperthermia (MH) 0 1 1
Marfan Syndrome (MFS) 5 2 7
"Mastocytosis (Mast Cell Activating Disease, MCAD)" 55 1 56
McCune-Albright Syndrome (MAS) 0 1 1
Median arcuate ligament syndrome (MALS) 2 0 2
Memory Loss 9 5 14
Meniere's Disease (MD) 9 0 9
Menopause 17 1 18
"Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods)" 13 0 13
Mental Illness 24 7 31
Metabolic Syndrome 3 0 3
Methicillin-Resistant Staphylococcus Aureus (MRSA) 3 0 3
Microscopic Colitis 6 0 6
Microtia 1 1 2
Migraine 283 5 288
Misophonia 3 0 3
Mitochondrial Disease 7 1 8
Mixed Connective Tissue Disease (MCTD) 12 0 12
Monoclonal gammopathy of undetermined significance (MGUS) 1 0 1
Mood Disorder 13 0 13
Moyamoya Disease 2 0 2
MTHFR 1 0 1
Mucopolysaccharidoses (MPS) 1 0 1
Multiple Endocrine Neoplasia (MEN) 4 0 4
Multiple Myeloma (MM) 3 0 3
Multiple Sclerosis (MS) 236 14 250
Multiple System Atrophy (MSA) 2 0 2
Muscle Spasms 10 0 10
Muscle Tension Dysphonia (MTD) 2 0 2
Muscular Dystrophy (MD) 28 10 38
Myasthenia Gravis (MG) 14 0 14
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 5 0 5
Myelodysplastic syndrome (MDS) 5 0 5
Myelofibrosis 0 1 1
Myeloproliferative Neoplasms 0 1 1
Myopathy 4 2 6
Myositis 4 0 4
Narcolepsy 16 1 17
Neck Surgery 1 0 1
Neuralgia 19 0 19
Neuroblastoma 0 2 2
Neuroendocrine Cancer (NET) 8 1 9
Neurofibromatosis (NF) 6 2 8
Neurogenic Bladder 12 1 13
Neurogenic Bowel 3 0 3
Neuromyelitis optica (NMO) 29 0 29
Neuropathy 60 2 62
Neutropenia 2 2 4
Niemann-Pick Disease 1 0 1
Non-Hodgkin's Lymphoma (NHL) 12 1 13
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 3 0 3
Nontuberculous Mycobacterial (NTM) 1 0 1
Noonan Syndrome (NS) 0 1 1
Obesity 94 1 95
Obsessive Compulsive Disorder (OCD) 149 8 157
Oppositional Defiant Disorder (ODD) 11 5 16
Organ Transplant 23 1 24
Osteoarthritis (OA) 194 9 203
Osteogenesis Imperfecta (OI) 7 2 9
Osteomyelitis (OM) 1 0 1
Osteopenia 12 2 14
Osteoporosis 44 6 50
Ostomy 3 1 4
Ovarian Cancer 7 0 7
Ovarian Cyst 12 0 12
Overactive Bladder (OAB) 17 0 17
Paget's 1 0 1
Pancreatic Cancer 1 1 2
Pancreatitis 2 1 3
Paralysis 17 3 20
Paraneoplastic Syndrome 1 0 1
Parkinson's Disease (PD) 20 13 33
Paroxysmal Nocturnal Hemoglobinuria (PNH) 4 0 4
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 20 0 20
Pemphigus / Pemphigoid 11 1 12
Periodic Limb Movement Disorder (PLMD) 3 0 3
Periodontitis (Gum Disease) 1 0 1
Periventricular Leukomalacia (PVL) 0 1 1
Personality Disorder 8 1 9
Phenylketonuria (PKU) 4 3 7
Pheochromocytoma (PCC) 1 0 1
Pierre Robin Sequence (PRS) 0 1 1
Pituitary Tumor 12 0 12
Plantar Fasciitis (PF) 18 0 18
Pneumonia 4 0 4
Poland Syndrome 1 0 1
Polio 2 0 2
Polychrondritis 6 0 6
Polycystic Ovarian Syndrome (PCOS) 176 3 179
Polycythemia Vera (PV) 9 0 9
Polymicrogyria (PMG) 0 2 2
Polymyalgia Rheumatica (PMR) 1 0 1
Polymyositis (PM) 4 0 4
Pompe Disease 0 2 2
Porphyria 2 1 3
Post-Polio Syndrome (PPS) 3 0 3
Posttraumatic Stress Disorder (PTSD) 339 8 347
Pre-exposure Prophylaxis (PrEP) 1 0 1
Precocious Puberty 0 1 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 4 0 4
Premenstrual Dysphoric Disorder (PMDD) 46 0 46
Primary Immunodeficiency (PID) 11 2 13
Prolactinoma 4 0 4
Prostate Cancer 9 2 11
Protein Deficiency 4 0 4
Proteinuria (Protein in Urine) 1 0 1
Psoriasis 100 3 103
Psoriatic Arthritis (PsA) 49 2 51
"Ptosis (Drooping eye, Blepharoptosis)" 1 2 3
Pulmonary Arterial Hypertension (PAH) 16 3 19
Pulmonary Embolism (PE) 6 0 6
Pulmonary Fibrosis (PF) 6 0 6
Pyoderma Gangrenosum (PG) 3 0 3
Raynaud's Syndrome 76 1 77
Rectal Cancer (CRC) 0 1 1
Rectocele 1 0 1
"Renal Cell Carcinoma (Kidney Cancer, RCC)" 8 1 9
Respiratory Disease 2 0 2
Restless Leg Syndrome (RLS) 27 1 28
Rheumatoid Arthritis (RA) 159 12 171
Rickets (Osteomalacia) 1 0 1
Rosacea 25 0 25
Sacroiliac Joint Disease (SI) 5 0 5
Sarcoidosis 9 0 9
Sarcoma 2 0 2
Scheuermann's Kyphosis 1 2 3
Schizophrenia* 20 7 27
Sciatica 24 1 25
Scleroderma 20 2 22
Scoliosis 78 10 88
Secondary Adrenal insufficiency 8 1 9
Secondary Immune Deficiency (SID) 8 0 8
Sensory Processing Disorder (SPD) 21 6 27
Sepsis 0 1 1
Shingles (Herpes Zoster) 7 0 7
"Short Bowel Syndrome (SBS, Short Gut)" 6 2 8
Shoulder Replacement 1 0 1
Sickle Cell Disease (SCD): Sickle Cell Trait 2 2 4
Sickle Cell Disease (SCD)* 16 18 34
Sinusitis 23 2 25
"Sjogren's Syndrome (SjS, SS)" 33 0 33
Skin Cancer 20 1 21
Sleep Apnea (OSA) 80 9 89
Sleep Disorder 27 0 27
Small Intestinal Bacterial Overgrowth (SIBO) 13 0 13
Sotos Syndrome 0 1 1
Spastic Diplegia 1 1 2
Spasticity 2 0 2
Speech Impairment 3 3 6
Spherocytosis 1 0 1
Spina Bifida (SB) 9 3 12
Spinal Cancer 1 0 1
Spinal Cord 63 6 69
Spinal Muscular Atrophy (SMA) 20 52 72
Stiff Person Syndrome (SPS) 3 0 3
Stomach Cancer 1 0 1
Stomach Ulcer 9 3 12
Stroke 16 11 27
Subglottic Stenosis (SGS) 1 0 1
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 5 0 5
Syncope 13 0 13
Syringomyelia 8 0 8
Tardive Dyskinesia (TD) 1 0 1
Tarlov Cysts 5 0 5
Temporomandibular joint (TMJ) 48 0 48
Tendonitis 14 0 14
Tenosynovial Giant Cell Tumor (TGCT) 1 0 1
Testicular Cancer 2 1 3
Thalassemia 8 1 9
Thoracic Outlet Syndrome (TOS) 16 0 16
Thrombocytopenia (TCP) 5 0 5
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 18 0 18
Thyroid Eye Disease (TED) 4 0 4
Thyroid Nodule 16 0 16
Thyroidectomy 8 0 8
Torticollis (Wry Neck) 2 1 3
Tourette Syndrome (TS) 19 5 24
Tracheobronchomalacia (TBM) 1 0 1
Tracheomalacia 0 1 1
Transient Global Amnesia (TGA) 2 0 2
Traumatic Brain Injury (TBI) 27 6 33
Trichotillomania (TTM) 9 0 9
Trigger Finger (Stenosing Tenosynovitis) 1 0 1
Trisomy 13 (Patau Syndrome) 0 1 1
Trisomy 18 (Edwards Syndrome) 0 1 1
Tuberculosis 1 2 3
Ulcerative Colitis (UC) 88 7 95
Undifferentiated Connective Tissue Disease (UCTD) 7 0 7
Urea Cycle Disorder (UCD) 4 1 5
Urinary Tract Infection (UTI) 11 2 13
Urticaria (Hives) 40 2 42
Uterine Fibroids 25 0 25
Uterine Polyps 2 0 2
Uveitis 5 0 5
VACTERL Syndrome 1 0 1
Vaginismus 4 0 4
Varicose Veins 7 0 7
Vasculitis 5 0 5
Vertigo 17 1 18
Vision Impairment 70 18 88
Vitamin B12 Deficiency 12 0 12
Vitamin D Deficiency 10 0 10
Vitiligo 5 0 5
Vocal Cord Dysfunction (VCD) 3 0 3
Von Hippel-Lindau Syndrome 1 0 1
Von Willebrand Disease (VWD) 9 1 10
Vulvar Cancer 1 0 1
Vulvodynia 6 0 6
"Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma)" 12 1 13
Wegener's Granulomatosis with Polyangiitis (GPA) 5 0 5
Wheelchair 169 69 238
Wilson's Disease (hepatolenticular degeneration) 1 0 1
Wolff-Parkinson-White (WPW) Syndrome 6 0 6
X-Linked Hypophosphatemia (XLH) 0 1 1
UK
Disease/Condition Patients Caregivers Total
Achalasia 10 0 10
Acne 33 6 39
Acoustic Neuroma (Vestibula Schwannoma) 7 0 7
Acromegaly 2 0 2
Addiction 33 19 52
Addison's Disease (Adrenal insufficiency) 38 6 44
Adenomyosis 53 0 53
Adhesive Capsulitis (Frozen Shoulder) 7 2 9
Agenesis of the Corpus Callosum (ACC) 0 2 2
Aicardi Syndrome 0 2 2
Alagille Syndrome (AS) 0 1 1
Albinism 0 1 1
Alkaptonuria 1 0 1
Allergies 227 24 251
Alopecia 24 2 26
Alpha 1 Antitrypsin Deficiency (A1AD) 5 2 7
Alternating Hemiplegia of Childhood (AHC) 1 1 2
Alzheimer's Disease (AD) 8 204 212
Amplified Musculoskeletal Pain Syndrome 8 1 9
Amputation 22 12 34
Amyloidosis 5 3 8
Amyotrophic Lateral Sclerosis (ALS) 0 4 4
Anal Cancer 4 0 4
Anemia 154 16 170
Aneurysm 9 4 13
Ankylosing Spondylitis (AS) 95 16 111
Anosmia (loss of smell) 3 0 3
Anoxic Brain Injury 1 0 1
Antiphospholipid Syndrome (APS) 20 5 25
Antisynthetase Syndrome 1 0 1
Anxiety 1639 173 1812
Aortic Disease 27 11 38
Aphantasia 3 0 3
Aphasia 3 7 10
Aplastic Anemia (AA) 2 2 4
Apraxia 1 1 2
Arachnoid Cyst 4 0 4
Arachnoiditis 3 0 3
Arteriovenous Malformation (AVM) 4 1 5
Arthrogryposis Multiplex Congenita (AMC) 6 3 9
Aspirin-like defect (ALD) 1 0 1
Asthma 1090 119 1209
Ataxia 16 10 26
Atrial Fibrillation (AFIB) 62 16 78
Atrophic Vaginitis 2 0 2
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 1480 161 1641
Atypical Hemolytic Uremic Syndrome (aHUS) 3 0 3
Auditory Processing Disorder (APD) 12 7 19
Autism 510 370 880
Autoimmune Disease 79 7 86
Autoimmune Encephalitis (AE) 1 0 1
Avascular Necrosis (AVN, Osteonecrosis) 17 1 18
Barrett's Esophagus 29 4 33
Bartonella 1 0 1
Basal Cell Carcinoma (BCC) 3 0 3
Beckwith-Wiedemann Syndrome (BWS) 0 1 1
Behcet's Disease (BD) 17 0 17
Bell's Palsy 4 0 4
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 16 5 21
Beta Thalassemia (Cooley s Anemia) 3 0 3
Bile Acid Malabsorption (BAD) 34 2 36
Bile Duct Cancer (Cholangiocarcinoma) 1 1 2
Bipolar 173 40 213
Bladder Cancer 18 5 23
Blood Cancer 9 6 15
Blood Clot 30 5 35
Blood Clotting Disorder 14 2 16
Bone Cancer 9 8 17
Borderline Personality Disorder (BPD) 265 30 295
Brain Aneurysm 15 4 19
Brain Cancer 5 9 14
Brain Damage 11 14 25
Brain Tumor 30 10 40
BRCA Mutation 6 0 6
Breast Cancer (BC) 109 22 131
Breast Cancer in Men 0 1 1
Bronchiectasis 39 3 42
Bronchitis 7 3 10
Bronchopulmonary Dysplasia (BPD) 0 1 1
Bulging Disc 48 1 49
Bursitis 27 2 29
Calcinosis 1 0 1
Cancer 252 109 361
Candidiasis (Yeast Infection) 7 0 7
Carcinoid Cancer 0 1 1
Carcinoma 4 2 6
Cardiofaciocutaneous Syndrome (CFC syndrome) 1 1 2
Caroli Disease 1 0 1
Carpal Tunnel Syndrome (CTS) 60 6 66
Castleman Disease (CD) 0 1 1
Catheter 3 1 4
Cauda Equina Syndrome 20 1 21
Celiac Disease (CCD) 65 5 70
Cellulitis 12 5 17
Central Pain Syndrome (CPS) 2 0 2
Cerebellar Atrophy 0 1 1
Cerebral Cavernous Malformations (CCMs) 2 0 2
Cerebral Palsy (CP) 28 50 78
Cervical Cancer 9 2 11
Cervical Dystonia 3 1 4
Charge Syndrome 0 1 1
Chiari Malformation (CM) 26 6 32
Chilblains (Pernio) 1 0 1
Chronic Fatigue Syndrome (CFS, ME) 469 21 490
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 9 3 12
Chronic Intestinal Pseudo-obstruction (CIPO) 6 4 10
Chronic obstructive pulmonary disease (COPD) 351 152 503
Chronic Pain 455 44 499
Chronic Venous Insufficiency (CVI) 0 1 1
Cleft 1 1 2
Clostridium difficile (C Diff) 2 0 2
Clubfoot 3 0 3
Cluster Headache 39 3 42
Coffin-Lowry Syndrome (CLS) 0 2 2
Cognitive Impairment (CI) 2 4 6
Colon Polyps 1 0 1
Colonic Inertia 1 0 1
Color Blind 1 0 1
Colorectal (Colon) Cancer 28 14 42
Complex Regional Pain Syndrome (CRPS, RSD) 50 2 52
Congenital Adrenal Hyperplasia (CAH) 4 1 5
Congenital Central Hypoventilation Syndrome (CCHS) 1 0 1
Congenital Myopathy 2 0 2
Constipation 34 10 44
Conversion Disorder (CD) 2 1 3
Coronavirus (COVID-19) 86 7 93
Cortical Dysplasia 1 1 2
Costochondritis 39 3 42
Cowden Syndrome (CS) 9 0 9
Craniocervical Instability (CCI) 3 0 3
Craniosynostosis 0 3 3
Crohn's Disease (CD) 206 12 218
Cushing's Disease (CS) 15 1 16
Cyclic Vomiting Syndrome (CVS) 17 6 23
Cystic Fibrosis (CF) 7 10 17
Cystinosis 2 2 4
Dandy Walker Syndrome (DWS) 1 1 2
Darier Disease (DD Keratosis Follicularis) 1 0 1
Deep Vein Thrombosis (DVT) 22 6 28
Degenerative Disc Disease (DDD) 147 8 155
Deletion Duplication Syndrome 1 10 11
Delta-Storage Pool Deficiency 1 0 1
Depression (MDD) 1766 174 1940
Dercum's Disease (adiposis dolorosa) 4 0 4
Dermatomyositis (DM) 4 1 5
Desmoid Tumor 2 0 2
Developmental Delay (DD) 11 52 63
Diabetes (DM) 948 282 1230
Disabled 15 9 24
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 16 7 23
Diverticulitis 121 17 138
Down Syndrome (DS) 0 16 16
Dry Mouth 4 0 4
Dupuytren's Contracture 9 0 9
Dwarfism 6 2 8
Dysarthria (Slurred Speech) 1 1 2
Dysautonomia 200 7 207
Dyskeratosis Congenita 2 0 2
Dyslexia 126 14 140
Dysmenorrhea (Painful Menstruation) 29 0 29
Dysphagia (Difficulty Swallowing) 15 10 25
Dystonia 15 7 22
Eating Disorder 106 13 119
Eczema (Atopic Dermatitis) 195 15 210
Edema 2 2 4
Ehlers-Danlos Syndrome (EDS) 341 21 362
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 3 0 3
Encephalitis 3 1 4
Endometrial Cancer 8 3 11
Endometriosis 274 8 282
Enlarged Spleen (Splenomegaly) 6 0 6
Eosinophilic Colitis (EC) 1 0 1
Eosinophilic Esophagitis (EOE) 10 0 10
Eosinophilic Gasteroenteritis (EG) 2 1 3
Epicondylitis (Tennis Elbow) 4 0 4
Epidermolysis Bullosa (EB) 2 0 2
Epilepsy 220 192 412
Epithelial Basement Membrane Dystrophy 0 1 1
Epstein Barr Syndrome (EBV) 1 0 1
Erectile Dysfunction (ED) 17 0 17
Erythema Nodosum 1 1 2
Erythromelalgia 17 0 17
Esophageal Atresia (EA) 1 0 1
Esophageal Cancer 2 1 3
Esophageal Varices 0 1 1
Essential Thrombocythemia 9 2 11
Essential Tremor 16 2 18
Exocrine Pancreatic Insufficiency (EPI) 11 2 13
Eye Cancer 0 2 2
Fabry disease 2 0 2
Failure to Thrive (FTT) 1 1 2
Familial Adenomatous Polyposis (FAP) 1 0 1
Familial Hypercholesterolemia (FH) 15 1 16
Familial Mediterranean Fever (FMF) 2 0 2
Fatty Oxidation Disorder (FAOD) 1 2 3
Feeding Tubes 9 4 13
Fetal Alcohol Syndrome (FAS) 1 6 7
Fibrocystic Breasts 6 1 7
Fibrodysplasia Ossificans Progressiva (FOP) 0 3 3
Fibromuscular Dysplasia (FMD) 5 0 5
Fibromyalgia (FM) 1131 70 1201
Fibrous Dysplasia 6 0 6
Fistula 6 4 10
Foot Drop 8 1 9
Fragile X Syndrome (FXS) 0 3 3
Functional Neurological Disorder (FND) 124 9 133
Gall Stones 40 3 43
Ganglioneuroblastoma 0 2 2
Gastric Bypass 9 1 10
Gastric Dysmotility 22 1 23
Gastritis 30 4 34
Gastroesophageal Reflux Disease (GERD) 211 29 240
Gastrointestinal Stromal Tumor (GIST) 1 1 2
Gastroparesis (GP) 67 6 73
Gastroschisis 4 1 5
Gaucher Disease (GD) 2 2 4
Gender Dysphoria 9 1 10
Giant Cell Arteritis (GCA) 5 0 5
Gluten Intolerance 15 0 15
Glycogen Storage Disease (GSD) 0 1 1
Goiter 4 1 5
Goldenhar Syndrome 2 0 2
Gout 34 8 42
Graft Versus Host Disease (GVHD) 1 1 2
Granular Cell Tumors 1 0 1
Granuloma Annulare (GA) 1 0 1
Grave's Disease (GD) 42 3 45
Guillain-Barre Syndrome (GBS) 8 2 10
Hashimoto's Disease (HT) 74 4 78
Head and Neck Cancer 8 3 11
Headache 66 7 73
Hearing Aid 61 13 74
Hearing Loss 173 46 219
Heart Disease 418 185 603
HELLP Syndrome 1 0 1
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 24 1 25
Hemolytic Disease of the Fetus and Newborn (HDFN) 1 1 2
Hemophilia 15 2 17
Hemorrhoids 9 0 9
Hepatitis 20 6 26
Hereditary alpha-tryptasemia (H?T) 2 0 2
Hereditary Angioedema (HAE) 12 0 12
Hereditary hemorrhagic telangiectasia (HHT) 2 1 3
Hereditary Spastic Paraparesis (HSP) 8 0 8
Hereditary Spastic Paraplegia (HSP) 2 1 3
Hernia 143 17 160
Herpes (HSV) 16 0 16
Hidradenitis Suppurativa (HS) 86 6 92
High Blood Pressure (Hypertension, HBP) 630 139 769
High Cholesterol (Hyperlipidemia) 262 53 315
Hip Dysplasia 19 4 23
Hip Replacement 37 7 44
Hirschsprung's Disease (HD, HSCR) 3 3 6
Hirsutism 4 0 4
HIV 24 3 27
Hodgkins Lymphoma 11 2 13
Horner Syndrome 3 0 3
Human Growth Hormone Deficiency (GHD) 14 5 19
Human Papillomavirus (Human Papillomavirus (HPV) 4 0 4
Huntington's Disease (HD) 6 6 12
Hydrocephalus 8 14 22
Hyperaldosteronism 2 0 2
Hyperemesis Gravidarum (HG, Morning Sickness) 1 0 1
Hyperhidrosis 20 0 20
Hyperkalemia 1 1 2
Hypermobility Syndrome 248 33 281
Hyperparathyroidism 24 3 27
Hypersomnia 5 0 5
Hyperthyroidism 52 6 58
Hypocalcemia 3 1 4
Hypoglycemia (Low Blood Sugar) 22 0 22
Hypokalemia 2 1 3
Hypokalemic Periodic Paralysis 1 1 2
Hyponatremia 1 0 1
Hypoparathyroidism 12 4 16
Hypophosphatasia (HPP) 1 0 1
Hypothyroidism 480 21 501
Hypotonia 0 5 5
Hypoxic Ischemic Encephalopathy (HIE) 0 3 3
Hysterectomy 14 0 14
IgG 4 related disease (IgG4-RD) 1 0 1
Immune Thrombocytopenic Purpura (ITP) 11 0 11
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 65 21 86
Infertility 10 1 11
Insomnia 99 7 106
Intellectual Disability 4 18 22
Intermittent Explosive Disorder (IED) 1 0 1
Interstitial Cystitis (IC) 30 1 31
Interstitial Lung Disease (ILD) 10 2 12
Intracranial Hemorrhage (Brain Bleeds) 5 6 11
Intracranial Hypertension (IH, Pseudotumor Cerebri) 36 2 38
intracranial Pressure (ICP) 4 0 4
Iritis 3 1 4
Irritable Bowel Syndrome (IBS) 541 44 585
Ischemic Colitis 1 0 1
Juvenile Arthritis (JA) 13 1 14
Keratosis Pilaris (follicular keratosis) 4 0 4
Kidney Disease 160 60 220
Klinefelter Syndrome (XXY Syndrome) 2 3 5
Klippel-Feil Syndrome (KFS) 4 0 4
Knee Replacement 29 2 31
Lactose Intolerance 20 1 21
Langerhans Cell Histiocytosis (LCH) 3 0 3
Laryngeal Cancer 1 2 3
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) 0 1 1
Learning Disability 30 83 113
Legg-Calve-Perthes Disease (LCPD) 1 0 1
Leiomyosarcoma 2 0 2
Leukemia 29 11 40
Leukodystrophy 3 3 6
Leukopenia 1 0 1
Lichen Planus 13 0 13
Lichen Sclerosis (LS) 26 1 27
Lipedema 12 1 13
Lipodystrophy 1 0 1
Liposarcoma 1 1 2
Liver Cancer 5 12 17
Liver Disease (not hepatitis) 108 30 138
Loeys Dietz Syndrome 4 0 4
Loin Pain Hematuria Syndrome (LPHS) 2 0 2
Loss of Mobility 49 33 82
Low Blood Pressure (Hypotension) 75 7 82
Low Testosterone 5 3 8
Lung Cancer 33 23 56
Lung Disease 61 19 80
Lupus 153 12 165
Lyme Disease 15 0 15
Lymphedema 44 14 58
Lymphocytic Colitis 3 0 3
Lymphoma 7 3 10
Lymphoproliferative Disease (LPD) 0 1 1
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 3 0 3
Macular Degeneration 17 20 37
Mal de debarquement Syndrome (MdDS) 4 0 4
Malabsorption 4 0 4
Malignant Hyperthermia (MH) 2 0 2
Marfan Syndrome (MFS) 2 1 3
Mastocytosis (Mast Cell Activating Disease, MCAD) 57 1 58
May Thurner Syndrome 2 0 2
Memory Loss 13 25 38
Meniere's Disease (MD) 34 1 35
Menopause 70 0 70
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 19 0 19
Mental Illness 138 81 219
Metabolic Syndrome 4 2 6
Methicillin-Resistant Staphylococcus Aureus (MRSA) 1 0 1
Microcephaly 1 10 11
Microscopic Colitis 4 1 5
Microtia 2 0 2
Migraine 570 25 595
Misophonia 4 0 4
Mitochondrial Disease 4 4 8
Mixed Connective Tissue Disease (MCTD) 18 0 18
Monoclonal gammopathy of undetermined significance (MGUS) 13 0 13
Mood Disorder 20 2 22
Morgellons Disease (MD) 1 0 1
Moyamoya Disease 2 1 3
MTHFR 1 1 2
Mucopolysaccharidoses (MPS) 1 1 2
Multiple Myeloma (MM) 13 9 22
Multiple Sclerosis (MS) 496 42 538
Multiple System Atrophy (MSA) 0 4 4
Muscle Spasms 14 2 16
Muscle Tension Dysphonia (MTD) 1 0 1
Muscular Dystrophy (MD) 31 15 46
Myasthenia Gravis (MG) 20 3 23
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 2 1 3
Myelodysplastic syndrome (MDS) 1 1 2
Myelofibrosis 3 2 5
Myeloproliferative Neoplasms 1 0 1
Myopathy 3 0 3
Myositis 1 0 1
Narcolepsy 29 3 32
Nasal Polyps 5 0 5
Neck Cancer 1 1 2
Neck Surgery 2 0 2
Neuralgia 59 1 60
Neuroendocrine Cancer (NET) 8 0 8
Neurofibromatosis (NF) 20 2 22
Neurogenic Bladder 16 2 18
Neurogenic Bowel 5 2 7
Neuromyelitis optica (NMO) 7 4 11
Neuropathy 173 22 195
Neutropenia 7 1 8
Niemann-Pick Disease 0 1 1
Non-Hodgkin's Lymphoma (NHL) 21 10 31
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 12 1 13
Nontuberculous Mycobacterial (NTM) 1 1 2
Noonan Syndrome (NS) 0 1 1
Obesity 96 19 115
Obsessive Compulsive Disorder (OCD) 168 23 191
Oppositional Defiant Disorder (ODD) 4 12 16
Oral Cancer 0 1 1
Organ Transplant 35 3 38
Osteoarthritis (OA) 934 149 1083
Osteogenesis Imperfecta (OI) 3 0 3
Osteomyelitis (OM) 5 3 8
Osteopenia 55 1 56
Osteoporosis 152 26 178
Ostomy 7 1 8
Ovarian Cancer 10 6 16
Ovarian Cyst 20 1 21
Overactive Bladder (OAB) 48 2 50
Pancreatic Cancer 4 6 10
Pancreatitis 25 7 32
Paraganglioma 1 0 1
Paralysis 21 13 34
Paraneoplastic Syndrome 1 1 2
Parkinson's Disease (PD) 20 55 75
Paroxysmal Nocturnal Hemoglobinuria (PNH) 4 1 5
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 1 0 1
Pelvic Congestion Syndrome (PCS) 4 0 4
Pelvic Floor Dysfunction 13 0 13
Pelvic Inflammatory Disease (PID) 4 0 4
Pemphigus / Pemphigoid 6 1 7
Periodic Limb Movement Disorder (PLMD) 7 1 8
Periodontitis (Gum Disease) 8 0 8
Periventricular Leukomalacia (PVL) 0 2 2
Personality Disorder 29 6 35
Pituitary Tumor 14 1 15
Plantar Fasciitis (PF) 46 1 47
Pneumonia 12 0 12
Poland Syndrome 2 1 3
Polio 3 5 8
Polycystic Ovarian Syndrome (PCOS) 239 5 244
Polycythemia Vera (PV) 4 0 4
Polymicrogyria (PMG) 1 1 2
Polymyalgia Rheumatica (PMR) 33 4 37
Pompe Disease 0 1 1
Porphyria 2 0 2
Post-Polio Syndrome (PPS) 6 5 11
Posttraumatic Stress Disorder (PTSD) 479 54 533
Precocious Puberty 0 2 2
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 6 1 7
Premenstrual Dysphoric Disorder (PMDD) 50 1 51
Primary Immunodeficiency (PID) 9 4 13
Progressive Multifocal Leukoencephalopathy (PML) 0 1 1
Progressive Supranuclear Palsy (PSP) 0 3 3
Prolactinoma 4 0 4
Prostate Cancer 13 15 28
Protein Deficiency 4 0 4
Proteinuria (Protein in Urine) 2 0 2
Prurigo Nodularis (PN) 7 0 7
Psoriasis 179 20 199
Psoriatic Arthritis (PsA) 86 6 92
Ptosis (Drooping eye, Blepharoptosis) 0 1 1
Pulmonary Arterial Hypertension (PAH) 13 8 21
Pulmonary Embolism (PE) 26 2 28
Pulmonary Fibrosis (PF) 15 4 19
Pyloric Stenosis (Gastric Outlet Obstruction) 0 1 1
Pyoderma Gangrenosum (PG) 3 1 4
Pyruvate Kinase Deficiency (PKD) 0 1 1
Raynaud's Syndrome 154 12 166
Rectal Cancer (CRC) 1 1 2
Rectocele 7 0 7
Renal Cell Carcinoma (Kidney Cancer, RCC) 12 4 16
Restless Leg Syndrome (RLS) 63 6 69
Rheumatoid Arthritis (RA) 417 97 514
Rickets (Osteomalacia) 2 0 2
Rosacea 16 0 16
Sacroiliac Joint Disease (SI) 6 3 9
Sarcoidosis 28 5 33
Sarcoma 7 0 7
Scheuermann's Kyphosis 16 3 19
Schizophrenia* 38 41 79
Sciatica 111 8 119
Scleroderma 19 4 23
Scoliosis 109 14 123
Secondary Adrenal insufficiency 12 0 12
Secondary Immune Deficiency (SID) 7 0 7
Sensory Processing Disorder (SPD) 26 40 66
Sepsis 14 2 16
Shingles (Herpes Zoster) 6 0 6
Short Bowel Syndrome (SBS, Short Gut) 11 1 12
Sickle Cell Disease (SCD): Sickle Cell Trait 7 0 7
Sickle Cell Disease (SCD)* 11 7 18
Sinusitis 36 4 40
Sjogren's Syndrome (SjS, SS) 64 2 66
Skin Cancer 17 7 24
Sleep Apnea (OSA) 141 30 171
Sleep Disorder 50 8 58
Small for Gestational Age SGA) 1 0 1
Small Intestinal Bacterial Overgrowth (SIBO) 7 1 8
Spasticity 1 1 2
Speech Impairment 2 12 14
Spherocytosis 5 0 5
Sphincter of Oddi Dysfunction 9 0 9
Spina Bifida (SB) 21 10 31
Spinal Cancer 0 1 1
Spinal Cord 204 28 232
Spinal Muscular Atrophy (SMA) 13 5 18
Sprengel Deformity 1 0 1
Stickler Syndrome 2 0 2
Stiff Person Syndrome (SPS) 3 0 3
Stomach Cancer 4 5 9
Stomach Ulcer 15 2 17
Stroke 115 102 217
Subcortical Band Heterotopia 0 1 1
Subglottic Stenosis (SGS) 2 0 2
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) 3 0 3
Syncope 15 0 15
Synesthesia 2 0 2
Syringomyelia 8 0 8
Tardive Dyskinesia (TD) 2 1 3
Tarlov Cysts 5 0 5
Tay Sachs (TSD) 0 2 2
Temporomandibular joint (TMJ) 65 1 66
Tendonitis 23 2 25
Tenosynovial Giant Cell Tumor (TGCT) 1 0 1
Testicular Cancer 7 2 9
Thalassemia 5 0 5
Thoracic Outlet Syndrome (TOS) 6 1 7
Throat Cancer 0 2 2
Thrombocytopenia (TCP) 9 1 10
Thrombotic Thrombocytopenic Purpura (TTP) 3 0 3
Thyroid Cancer 18 2 20
Thyroid Eye Disease (TED) 11 0 11
Thyroid Nodule 6 1 7
Thyroidectomy 7 0 7
Tics 7 3 10
Tooth Agenesis (Anodontia) 0 1 1
Torticollis (Wry Neck) 4 0 4
Tourette Syndrome (TS) 11 8 19
Tracheobronchomalacia (TBM) 3 1 4
Tracheomalacia 1 1 2
Traumatic Brain Injury (TBI) 16 9 25
Treacher Collins syndrome (TCS) 1 0 1
Trichotillomania (TTM) 7 0 7
Trigger Finger (Stenosing Tenosynovitis) 8 1 9
Trisomy X (XXX) 1 0 1
Tuberculosis 4 0 4
Ulcerative Colitis (UC) 163 5 168
Undifferentiated Connective Tissue Disease (UCTD) 19 0 19
Urethral Prolapse 0 1 1
Urinary Tract Infection (UTI) 27 5 32
Urticaria (Hives) 45 7 52
Uterine Cancer 2 0 2
Uterine Fibroids 44 0 44
Uterine Leiomyosarcoma 1 0 1
Uterine Polyps 4 0 4
Uveitis 17 3 20
Vaginismus 10 0 10
Varicose Veins 12 5 17
Vasculitis 22 5 27
Vertebral Artery Dissection (VAD) 2 0 2
Vertigo 49 6 55
Vision Impairment 184 60 244
Vitamin B12 Deficiency 76 4 80
Vitamin D Deficiency 51 1 52
Vitiligo 12 0 12
Vocal Cord Dysfunction (VCD) 7 0 7
Von Willebrand Disease (VWD) 6 1 7
Vulvar Cancer 5 2 7
Vulvodynia 3 0 3
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 1 0 1
Wegener's Granulomatosis with Polyangiitis (GPA) 3 0 3
Wheelchair 278 122 400
Williams Syndrome (WS) 1 1 2
Wilson's Disease (hepatolenticular degeneration) 3 0 3
Wolff-Parkinson-White (WPW) Syndrome 3 1 4
X-Linked Hypophosphatemia (XLH) 3 0 3
Germany
Disease/Condition Patients Caregivers Total
Achalasia 1 0 1
Acne 12 1 13
Acoustic Neuroma (Vestibula Schwannoma) 2 0 2
Adams-Oliver Syndrome (AOS) 1 0 1
Addiction 18 2 20
Addison's Disease (Adrenal insufficiency) 4 0 4
Adenomyosis 1 0 1
Adhesive Capsulitis (Frozen Shoulder) 3 0 3
Agenesis of the Corpus Callosum (ACC) 1 0 1
Aicardi Syndrome 1 0 1
Allergies 70 0 70
Alopecia 5 0 5
Alpha 1 Antitrypsin Deficiency (A1AD) 1 0 1
Alzheimer's Disease (AD) 3 60 63
Amplified Musculoskeletal Pain Syndrome 2 0 2
Amputation 5 0 5
Amyloidosis 0 1 1
Amyotrophic Lateral Sclerosis (ALS) 0 2 2
Anal Cancer 3 0 3
Anemia 17 1 18
Aneurysm 5 3 8
Ankylosing Spondylitis (AS) 9 0 9
Anosmia (loss of smell) 1 0 1
Anoxic Brain Injury 1 1 2
Antisynthetase Syndrome 1 0 1
Anxiety 111 6 117
Aortic Disease 4 3 7
Aphasia 1 1 2
Apraxia 0 1 1
Arachnoid Cyst 2 1 3
Arachnoiditis 2 0 2
Arteriovenous Malformation (AVM) 1 1 2
Asthma 116 9 125
Ataxia 1 0 1
Atrial Fibrillation (AFIB) 8 4 12
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 210 10 220
Autism 41 12 53
Autoimmune Disease 8 1 9
Avascular Necrosis (AVN, Osteonecrosis) 1 1 2
Barrett's Esophagus 1 0 1
Basal Cell Carcinoma (BCC) 1 0 1
Beckwith-Wiedemann Syndrome (BWS) 1 0 1
Behcet's Disease (BD) 3 0 3
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 7 1 8
Bile Acid Malabsorption (BAD) 1 0 1
Bipolar 27 0 27
Bladder Cancer 4 1 5
Blood Cancer 2 0 2
Blood Clotting Disorder 3 0 3
Bone Cancer 2 0 2
Borderline Personality Disorder (BPD) 41 1 42
Brain Aneurysm 2 1 3
Brain Damage 1 0 1
Brain Tumor 4 1 5
BRCA Mutation 3 0 3
Breast Cancer (BC) 15 4 19
Bronchitis 9 2 11
Bulging Disc 20 2 22
Bursitis 3 0 3
Cancer 62 15 77
Carcinoma 1 1 2
Cardiofaciocutaneous Syndrome (CFC syndrome) 1 0 1
Carpal Tunnel Syndrome (CTS) 5 0 5
Castleman Disease (CD) 3 1 4
Celiac Disease (CCD) 5 0 5
Cellulitis 1 0 1
Central Pain Syndrome (CPS) 2 0 2
Cerebral Palsy (CP) 0 2 2
Cervical Cancer 3 0 3
Charge Syndrome 1 0 1
Chronic Fatigue Syndrome (CFS, ME) 31 2 33
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 13 4 17
Chronic Intestinal Pseudo-obstruction (CIPO) 3 0 3
Chronic obstructive pulmonary disease (COPD) 83 20 103
Chronic Pain 111 17 128
Chronic Venous Insufficiency (CVI) 4 1 5
Clostridium difficile (C Diff) 1 0 1
Clubfoot 1 1 2
Cluster Headache 4 1 5
Cognitive Impairment (CI) 0 3 3
Colorectal (Colon) Cancer 8 3 11
Complex Regional Pain Syndrome (CRPS, RSD) 5 0 5
Congenital Adrenal Hyperplasia (CAH) 2 0 2
Congenital Sucrase-Isomaltase Deficiency (CSID) 1 0 1
Constipation 4 1 5
Coronavirus (COVID-19) 11 1 12
Craniocervical Instability (CCI) 1 0 1
Craniosynostosis 1 0 1
Crohn's Disease (CD) 20 0 20
Cushing's Disease (CS) 3 0 3
Cystic Fibrosis (CF) 2 0 2
Cytomegalovirus (CMV) 1 0 1
Deep Vein Thrombosis (DVT) 7 0 7
Degenerative Disc Disease (DDD) 18 2 20
Depression (MDD) 306 24 330
Developmental Delay (DD) 0 5 5
Diabetes (DM) 169 62 231
Disabled 1 1 2
Disruptive Mood Dysregulation Disorder (DMDD) 1 0 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 13 1 14
Diverticulitis 3 0 3
Down Syndrome (DS) 1 0 1
Duodenitis 1 0 1
Dysautonomia 16 0 16
Dyslexia 4 0 4
Dysmenorrhea (Painful Menstruation) 6 0 6
Dysphagia (Difficulty Swallowing) 2 1 3
Dystonia 2 0 2
Eating Disorder 24 0 24
Eczema (Atopic Dermatitis) 30 1 31
Edema 1 5 6
Ehlers-Danlos Syndrome (EDS) 16 0 16
Elephantiasis (Lymphatic Filariasis) 2 0 2
Encephalitis 2 1 3
Encephalocele 1 0 1
Endometrial Cancer 1 2 3
Endometriosis 21 0 21
Enlarged Spleen (Splenomegaly) 1 0 1
Enteric Hyperoxaluria 1 0 1
Eosinophilic Colitis (EC) 2 0 2
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 31 25 56
Epstein Barr Syndrome (EBV) 2 0 2
Erb's Palsy 2 0 2
Erectile Dysfunction (ED) 3 0 3
Esophageal Cancer 0 1 1
Essential Thrombocythemia 1 0 1
Essential Tremor 4 2 6
Exocrine Pancreatic Insufficiency (EPI) 3 0 3
Eye Cancer 1 1 2
Fabry disease 1 0 1
Failure to Thrive (FTT) 0 1 1
Familial Hypercholesterolemia (FH) 2 0 2
Feeding Tubes 1 0 1
Fetal Alcohol Syndrome (FAS) 1 3 4
Fibrodysplasia Ossificans Progressiva (FOP) 1 0 1
Fibromyalgia (FM) 76 2 78
Functional Neurological Disorder (FND) 4 0 4
Galactosemia 1 0 1
Gall Stones 7 1 8
Ganglioneuroblastoma 1 0 1
Gastric Bypass 8 0 8
Gastric Dysmotility 2 0 2
Gastritis 21 1 22
Gastroesophageal Reflux Disease (GERD) 21 1 22
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 8 0 8
Gastroschisis 1 0 1
Gender Dysphoria 5 0 5
Giant Cell Arteritis (GCA) 1 0 1
Gluten Intolerance 1 0 1
Gout 18 0 18
Grave's Disease (GD) 5 0 5
Guillain-Barre Syndrome (GBS) 4 0 4
Hashimoto's Disease (HT) 47 1 48
Head and Neck Cancer 1 0 1
Headache 36 2 38
Hearing Aid 5 0 5
Hearing Loss 24 2 26
Heart Disease 88 50 138
Hemangioma 2 0 2
Hemochromatosis (Iron Overload) 3 0 3
Hemophilia 3 0 3
Hemorrhoids 7 0 7
Hepatitis 9 0 9
Hereditary Angioedema (HAE) 0 1 1
Hereditary Spastic Paraparesis (HSP) 3 1 4
Hereditary Spastic Paraplegia (HSP) 2 1 3
Hernia 9 1 10
Herpes (HSV) 3 0 3
Hidradenitis Suppurativa (HS) 7 0 7
High Blood Pressure (Hypertension, HBP) 178 40 218
High Cholesterol (Hyperlipidemia) 24 5 29
Hip Dysplasia 3 0 3
Hip Replacement 5 4 9
Hirsutism 1 0 1
HIV 7 1 8
Hodgkins Lymphoma 1 1 2
Human Papillomavirus (Human Papillomavirus (HPV) 2 0 2
Hyperaldosteronism 1 0 1
Hyperhidrosis 3 0 3
Hyperkalemia 2 0 2
Hypermobility Syndrome 10 0 10
Hyperparathyroidism 0 1 1
Hypersomnia 4 0 4
Hyperthyroidism 1 0 1
Hypoglycemia (Low Blood Sugar) 2 0 2
Hyponatremia 0 1 1
Hypoparathyroidism 2 0 2
Hypophosphatasia (HPP) 0 1 1
Hypothyroidism 65 1 66
Hypotonia 6 1 7
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 22 12 34
Insomnia 19 0 19
Intellectual Disability 0 2 2
Interstitial Cystitis (IC) 2 0 2
Intracranial Hemorrhage (Brain Bleeds) 1 2 3
Intracranial Hypertension (IH, Pseudotumor Cerebri) 2 0 2
Irritable Bowel Syndrome (IBS) 35 3 38
Juvenile Arthritis (JA) 1 0 1
Kaposi Sarcoma (KS) 1 0 1
Kawasaki Disease 1 0 1
Kidney Disease 27 10 37
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 6 5 11
Lactose Intolerance 6 1 7
Laryngeal Cancer 2 0 2
Laryngomalacia 2 0 2
Leukemia 2 3 5
Leukocytosis 1 0 1
Lichen Sclerosis (LS) 1 0 1
Lipedema 19 0 19
Liposarcoma 1 0 1
Liver Cancer 1 4 5
Liver Disease (not hepatitis) 15 0 15
Loin Pain Hematuria Syndrome (LPHS) 2 0 2
Loss of Mobility 4 2 6
Low Blood Pressure (Hypotension) 3 0 3
Low Testosterone 2 0 2
Lung Cancer 3 7 10
Lung Disease 6 2 8
Lupus 18 1 19
Lyme Disease 2 0 2
Lymphedema 17 1 18
Lymphocytic Colitis 1 0 1
Lymphoma 3 0 3
Lymphoproliferative Disease (LPD) 0 1 1
Macular Degeneration 3 1 4
Malabsorption 1 0 1
Marfan Syndrome (MFS) 2 0 2
Mastocytosis (Mast Cell Activating Disease, MCAD) 4 0 4
McCune-Albright Syndrome (MAS) 1 0 1
Memory Loss 1 3 4
Meniere's Disease (MD) 2 1 3
Menopause 5 0 5
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 2 0 2
Mental Illness 15 5 20
Mesothelioma 1 0 1
Microcephaly 0 1 1
Microscopic Colitis 1 0 1
Migraine 97 2 99
Mixed Connective Tissue Disease (MCTD) 1 0 1
Moebius Syndrome 1 0 1
Monoclonal gammopathy of undetermined significance (MGUS) 1 0 1
Mood Disorder 2 0 2
Multiple Myeloma (MM) 0 1 1
Multiple Sclerosis (MS) 42 10 52
Muscle Spasms 2 1 3
Muscular Dystrophy (MD) 2 2 4
Myasthenia Gravis (MG) 4 2 6
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 2 0 2
Myeloproliferative Neoplasms 1 0 1
Myopathy 1 0 1
Myositis 4 0 4
Narcolepsy 5 0 5
Nasal Polyps 1 0 1
Neck Surgery 0 1 1
Neuralgia 6 0 6
Neurofibromatosis (NF) 1 0 1
Neurogenic Bladder 2 0 2
Neurogenic Bowel 1 0 1
Neuropathy 33 6 39
Neutropenia 1 0 1
Obesity 81 7 88
Obsessive Compulsive Disorder (OCD) 8 2 10
Oral Cancer 2 1 3
Organ Transplant 3 1 4
Osteoarthritis (OA) 104 13 117
Osteomyelitis (OM) 2 1 3
Osteopenia 7 0 7
Osteoporosis 22 13 35
Ovarian Cancer 4 0 4
Ovarian Cyst 1 0 1
Overactive Bladder (OAB) 9 0 9
Pancreatic Cancer 3 0 3
Pancreatitis 8 1 9
Paralysis 16 8 24
Parkinson's Disease (PD) 4 18 22
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 0 1
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 2 0 2
Pemphigus / Pemphigoid 0 1 1
Periodic Limb Movement Disorder (PLMD) 1 0 1
Periodontitis (Gum Disease) 6 0 6
Periventricular Leukomalacia (PVL) 1 0 1
Personality Disorder 6 2 8
Plantar Fasciitis (PF) 2 0 2
Pneumonia 2 1 3
Polio 1 0 1
Polychrondritis 0 1 1
Polycystic Ovarian Syndrome (PCOS) 13 0 13
Polycythemia Vera (PV) 1 0 1
Polymyalgia Rheumatica (PMR) 3 0 3
Porphyria 1 0 1
Posttraumatic Stress Disorder (PTSD) 98 6 104
Premenstrual Dysphoric Disorder (PMDD) 5 0 5
Primary Ciliary Dyskinesia (PCD) 3 0 3
Primary Immunodeficiency (PID) 3 0 3
Progressive Supranuclear Palsy (PSP) 1 2 3
Prolactinoma 3 0 3
Prostate Cancer 2 5 7
Psoriasis 33 0 33
Psoriatic Arthritis (PsA) 3 0 3
Pulmonary Arterial Hypertension (PAH) 6 0 6
Pulmonary Embolism (PE) 12 0 12
Pulmonary Fibrosis (PF) 1 0 1
Pyloric Stenosis (Gastric Outlet Obstruction) 1 0 1
Raynaud's Syndrome 4 0 4
Rectal Cancer (CRC) 0 1 1
Renal Cell Carcinoma (Kidney Cancer, RCC) 1 2 3
Restless Leg Syndrome (RLS) 19 1 20
Rheumatoid Arthritis (RA) 42 14 56
Rosacea 5 0 5
Sarcoidosis 5 1 6
Scheuermann's Kyphosis 1 0 1
Schizencephaly 1 0 1
Schizophrenia* 13 3 16
Sciatica 4 1 5
Scleroderma 3 0 3
Scoliosis 29 3 32
Secondary Adrenal insufficiency 9 2 11
Sensory Processing Disorder (SPD) 1 0 1
Sepsis 0 1 1
Shingles (Herpes Zoster) 4 0 4
Short Bowel Syndrome (SBS, Short Gut) 2 0 2
Sickle Cell Disease (SCD): Sickle Cell Trait 1 0 1
Sinusitis 10 0 10
Sjogren's Syndrome (SjS, SS) 3 0 3
Skin Cancer 7 2 9
Sleep Apnea (OSA) 22 2 24
Sleep Disorder 37 0 37
Small Intestinal Bacterial Overgrowth (SIBO) 1 0 1
Spasticity 5 1 6
Speech Impairment 2 1 3
Spina Bifida (SB) 2 0 2
Spinal Cord 51 8 59
Spinal Muscular Atrophy (SMA) 1 2 3
Sprengel Deformity 1 0 1
Stomach Cancer 0 4 4
Stomach Ulcer 1 1 2
Stroke 31 33 64
Subglottic Stenosis (SGS) 1 0 1
Syncope 2 0 2
Syringomyelia 2 0 2
Tarlov Cysts 2 0 2
Temporomandibular joint (TMJ) 5 0 5
Tendonitis 1 0 1
Thalassemia 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 8 0 8
Tics 2 0 2
Tourette Syndrome (TS) 3 0 3
Traumatic Brain Injury (TBI) 1 0 1
Trichotillomania (TTM) 1 0 1
Trisomy X (XXX) 0 1 1
Tuberculosis 4 0 4
Ulcerative Colitis (UC) 13 2 15
Undifferentiated Connective Tissue Disease (UCTD) 2 0 2
Urinary Tract Infection (UTI) 3 0 3
Urticaria (Hives) 5 0 5
Uterine Cancer 3 0 3
Uterine Polyps 1 0 1
Uveitis 2 0 2
Varicose Veins 2 2 4
Vasculitis 1 1 2
Vertigo 5 7 12
Vision Impairment 35 10 45
Vitamin B12 Deficiency 8 1 9
Vitamin D Deficiency 3 1 4
Vitiligo 3 1 4
Vocal Cord Dysfunction (VCD) 1 0 1
Von Willebrand Disease (VWD) 2 0 2
Vulvodynia 1 0 1
Wegener's Granulomatosis with Polyangiitis (GPA) 1 0 1
Wheelchair 9 6 15
Wolff-Parkinson-White (WPW) Syndrome 1 0 1
France
Disease/Condition Patients Caregivers Total
Acne 19 2 21
Acromegaly 0 1 1
Addiction 22 6 28
Addison's Disease (Adrenal insufficiency) 2 1 3
Adenomyosis 8 1 9
Adhesive Capsulitis (Frozen Shoulder) 2 1 3
Aicardi Syndrome 1 0 1
Allergies 87 6 93
Alopecia 3 0 3
Alzheimer's Disease (AD) 6 95 101
Amplified Musculoskeletal Pain Syndrome 2 1 3
Amputation 6 3 9
Amyotrophic Lateral Sclerosis (ALS) 0 2 2
Anemia 21 1 22
Aneurysm 6 1 7
Ankylosing Spondylitis (AS) 41 1 42
Antiphospholipid Syndrome (APS) 2 0 2
Anxiety 128 2 130
Aortic Disease 4 1 5
Aphasia 0 1 1
Aplastic Anemia (AA) 2 0 2
Appendix Cancer 1 0 1
Arachnoiditis 1 0 1
Arteriovenous Malformation (AVM) 1 1 2
Arthrogryposis Multiplex Congenita (AMC) 0 1 1
Asthma 181 13 194
Ataxia 0 1 1
Atrial Fibrillation (AFIB) 4 3 7
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 87 17 104
Auditory Processing Disorder (APD) 1 0 1
Autism 37 39 76
Autoimmune Disease 8 1 9
Avascular Necrosis (AVN, Osteonecrosis) 2 0 2
Barth Syndrome (BTHS) 1 0 1
Basal Cell Carcinoma (BCC) 0 1 1
Behcet's Disease (BD) 1 0 1
Bell's Palsy 2 0 2
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 7 0 7
Bile Acid Malabsorption (BAD) 1 0 1
Bile Duct Cancer (Cholangiocarcinoma) 1 0 1
Bipolar 66 14 80
Bladder Cancer 4 2 6
Blood Cancer 1 3 4
Bone Cancer 2 0 2
Borderline Personality Disorder (BPD) 36 1 37
Brain Aneurysm 3 0 3
Brain Cancer 3 2 5
Brain Damage 4 0 4
Brain Tumor 10 2 12
BRCA Mutation 1 0 1
Breast Cancer (BC) 65 8 73
Bronchiectasis 1 0 1
Bronchitis 10 0 10
Bulging Disc 28 1 29
Bursitis 1 0 1
Calcinosis 1 0 1
Campomelic Dysplasia 1 0 1
Cancer 124 67 191
Candidiasis (Yeast Infection) 1 0 1
Carcinoid Cancer 0 1 1
Carcinoma 2 1 3
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Caroli Disease 1 0 1
Carpal Tunnel Syndrome (CTS) 8 0 8
Cauda Equina Syndrome 3 0 3
Celiac Disease (CCD) 5 0 5
Cellulitis 1 0 1
Cerebral Amyloid Angiopathy 0 1 1
Cerebral Cavernous Malformations (CCMs) 0 1 1
Cerebral Palsy (CP) 2 4 6
Cervical Cancer 3 3 6
Cervical Dystonia 1 0 1
Chiari Malformation (CM) 2 0 2
Chronic Fatigue Syndrome (CFS, ME) 27 0 27
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 5 0 5
Chronic Intestinal Pseudo-obstruction (CIPO) 2 0 2
Chronic obstructive pulmonary disease (COPD) 55 8 63
Chronic Pain 69 4 73
Chronic Venous Insufficiency (CVI) 6 1 7
Clubfoot 1 0 1
Cluster Headache 6 0 6
Cognitive Impairment (CI) 4 3 7
Colon Polyps 2 1 3
Colorectal (Colon) Cancer 8 6 14
Complex Regional Pain Syndrome (CRPS, RSD) 13 2 15
Congenital Myopathy 1 0 1
Constipation 8 0 8
Coronavirus (COVID-19) 26 6 32
Crohn's Disease (CD) 31 11 42
Cushing's Disease (CS) 3 0 3
Cystic Fibrosis (CF) 1 0 1
Cytomegalovirus (CMV) 0 1 1
Deep Vein Thrombosis (DVT) 10 0 10
Degenerative Disc Disease (DDD) 23 3 26
Depression (MDD) 267 18 285
Developmental Delay (DD) 0 2 2
Diabetes (DM) 220 76 296
Disabled 11 9 20
Disruptive Mood Dysregulation Disorder (DMDD) 0 1 1
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 7 0 7
Diverticulitis 5 0 5
Down Syndrome (DS) 0 1 1
Dry Mouth 1 1 2
Dysautonomia 10 0 10
Dyskeratosis Congenita 1 0 1
Dyslexia 6 3 9
Dysmenorrhea (Painful Menstruation) 2 0 2
Dysphagia (Difficulty Swallowing) 1 0 1
Dystonia 3 1 4
Eating Disorder 32 1 33
Eczema (Atopic Dermatitis) 50 3 53
Edema 6 0 6
Ehlers-Danlos Syndrome (EDS) 19 3 22
Elephantiasis (Lymphatic Filariasis) 0 1 1
Encephalitis 1 0 1
Endometrial Cancer 1 0 1
Endometriosis 67 2 69
Enlarged Spleen (Splenomegaly) 0 1 1
Eosinophilic Esophagitis (EOE) 2 1 3
Epicondylitis (Tennis Elbow) 2 1 3
Epilepsy 47 26 73
Epithelial Basement Membrane Dystrophy 1 0 1
Erectile Dysfunction (ED) 2 0 2
Esophageal Cancer 1 2 3
Essential Thrombocythemia 2 0 2
Essential Tremor 1 0 1
Familial Adenomatous Polyposis (FAP) 1 0 1
Familial Hypercholesterolemia (FH) 22 0 22
Familial Mediterranean Fever (FMF) 1 1 2
Fibrocystic Breasts 1 0 1
Fibromuscular Dysplasia (FMD) 5 0 5
Fibromyalgia (FM) 156 5 161
Fragile X Syndrome (FXS) 1 0 1
Friedreich's Ataxia (FA) 0 1 1
Functional Neurological Disorder (FND) 7 1 8
Gall Stones 5 0 5
Ganglioneuroblastoma 1 0 1
Gastric Bypass 2 0 2
Gastric Dysmotility 1 0 1
Gastritis 10 1 11
Gastroesophageal Reflux Disease (GERD) 35 1 36
Gaucher Disease (GD) 1 0 1
Gender Dysphoria 5 0 5
Giant Cell Arteritis (GCA) 1 1 2
Gluten Intolerance 5 0 5
Glycogen Storage Disease (GSD) 0 1 1
Goiter 1 0 1
Goldenhar Syndrome 1 0 1
Gout 3 0 3
Grave's Disease (GD) 7 0 7
Guillain-Barre Syndrome (GBS) 0 1 1
Hashimoto's Disease (HT) 27 1 28
Head and Neck Cancer 2 0 2
Headache 17 0 17
Hearing Aid 6 0 6
Hearing Loss 33 3 36
Heart Disease 96 26 122
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemophilia 5 0 5
Hemorrhoids 4 0 4
Hepatitis 5 1 6
Hereditary Angioedema (HAE) 1 0 1
Hereditary Spastic Paraparesis (HSP) 2 0 2
Hereditary Spastic Paraplegia (HSP) 0 1 1
Hernia 24 1 25
Herpes (HSV) 4 0 4
Hidradenitis Suppurativa (HS) 2 1 3
High Blood Pressure (Hypertension, HBP) 217 28 245
High Cholesterol (Hyperlipidemia) 34 6 40
Hip Dysplasia 1 0 1
Hip Replacement 2 4 6
HIV 16 1 17
Hodgkins Lymphoma 1 1 2
Human Growth Hormone Deficiency (GHD) 2 1 3
Human Papillomavirus (Human Papillomavirus (HPV) 11 0 11
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) 2 0 2
Hypermobility Syndrome 3 0 3
Hyperparathyroidism 7 0 7
Hypersomnia 7 0 7
Hyperthyroidism 19 2 21
Hypoglycemia (Low Blood Sugar) 4 0 4
Hypokalemia 1 0 1
Hypoparathyroidism 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 75 4 79
Immune Thrombocytopenic Purpura (ITP) 2 0 2
Incontinence 5 5 10
Infertility 6 0 6
Insomnia 36 3 39
Intellectual Disability 2 5 7
Interstitial Cystitis (IC) 5 0 5
Interstitial Lung Disease (ILD) 1 0 1
Intracranial Hypertension (IH, Pseudotumor Cerebri) 5 0 5
Irritable Bowel Syndrome (IBS) 61 2 63
Juvenile Arthritis (JA) 1 2 3
Keratosis Pilaris (follicular keratosis) 1 0 1
Kidney Disease 23 6 29
Knee Replacement 5 1 6
Lactose Intolerance 4 0 4
Laryngeal Cancer 1 1 2
Learning Disability 0 3 3
Leiomyosarcoma 1 0 1
Leukemia 4 3 7
Leukopenia 1 0 1
Lichen Planus 1 0 1
Liposarcoma 0 1 1
Livedo Reticularis (LR) 1 0 1
Liver Cancer 5 3 8
Liver Disease (not hepatitis) 18 3 21
Loss of Mobility 9 6 15
Low Blood Pressure (Hypotension) 7 1 8
Lung Cancer 17 16 33
Lung Disease 18 4 22
Lupus 27 2 29
Lyme Disease 5 0 5
Lymphedema 3 0 3
Lymphoma 4 0 4
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 1 0 1
Macular Degeneration 2 3 5
Malignant Hyperthermia (MH) 1 0 1
Maple Syrup Urine Disease (MSUD) 1 0 1
Marfan Syndrome (MFS) 2 1 3
Mastocytosis (Mast Cell Activating Disease, MCAD) 5 0 5
Median arcuate ligament syndrome (MALS) 0 1 1
Memory Loss 7 17 24
Meniere's Disease (MD) 5 1 6
Menopause 13 0 13
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 1 0 1
Mental Illness 6 6 12
Metabolic Syndrome 0 2 2
Microscopic Colitis 1 0 1
Migraine 110 5 115
Misophonia 1 0 1
Mixed Connective Tissue Disease (MCTD) 3 0 3
Mood Disorder 17 3 20
MTHFR 1 0 1
Multiple Endocrine Neoplasia (MEN) 1 0 1
Multiple Myeloma (MM) 3 0 3
Multiple Sclerosis (MS) 69 18 87
Muscle Spasms 2 0 2
Muscular Dystrophy (MD) 2 0 2
Myasthenia Gravis (MG) 6 1 7
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 1 0 1
Myeloproliferative Neoplasms 1 1 2
Myopathy 6 3 9
Narcolepsy 4 1 5
Nasal Polyps 3 1 4
Neck Cancer 1 0 1
Neuralgia 18 0 18
Neuroendocrine Cancer (NET) 0 1 1
Neurofibromatosis (NF) 3 0 3
Neurogenic Bladder 3 0 3
Neuromyelitis optica (NMO) 2 0 2
Neuropathy 30 3 33
Neurotrophic Keratitis 1 0 1
Non-Hodgkin's Lymphoma (NHL) 3 1 4
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 3 0 3
Obesity 82 7 89
Obsessive Compulsive Disorder (OCD) 17 3 20
Oppositional Defiant Disorder (ODD) 1 0 1
Oral Cancer 2 1 3
Organ Transplant 7 5 12
Osteoarthritis (OA) 105 21 126
Osteogenesis Imperfecta (OI) 0 1 1
Osteoporosis 18 3 21
Ostomy 0 1 1
Ovarian Cancer 3 1 4
Ovarian Cyst 4 1 5
Overactive Bladder (OAB) 3 2 5
Paget's 1 0 1
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 5 1 6
Pancreatitis 4 1 5
Paralysis 15 14 29
Parkinson's Disease (PD) 10 30 40
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 0 2 2
Pelvic Floor Dysfunction 0 1 1
Pemphigus / Pemphigoid 1 0 1
Periodontitis (Gum Disease) 4 0 4
Persistent Genital Arousal Disorder 1 0 1
Personality Disorder 6 0 6
Peyronie's Disease (Penile Fibrosis) 1 0 1
Pituitary Tumor 2 0 2
Plantar Fasciitis (PF) 1 0 1
Pneumonia 4 2 6
Poland Syndrome 1 0 1
Polio 2 0 2
Polycystic Ovarian Syndrome (PCOS) 25 1 26
Polymicrogyria (PMG) 0 1 1
Polymyalgia Rheumatica (PMR) 2 0 2
Post-Polio Syndrome (PPS) 1 0 1
Posttraumatic Stress Disorder (PTSD) 49 2 51
Pre-exposure Prophylaxis (PrEP) 1 0 1
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 2 0 2
Premenstrual Dysphoric Disorder (PMDD) 2 0 2
Primary Ciliary Dyskinesia (PCD) 1 0 1
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Prolactinoma 1 0 1
Prostate Cancer 4 5 9
Protein Deficiency 2 0 2
Psoriasis 42 1 43
Psoriatic Arthritis (PsA) 13 1 14
Pulmonary Arterial Hypertension (PAH) 12 2 14
Pulmonary Embolism (PE) 5 0 5
Pulmonary Fibrosis (PF) 1 2 3
Raynaud's Syndrome 10 0 10
Renal Cell Carcinoma (Kidney Cancer, RCC) 2 2 4
Restless Leg Syndrome (RLS) 14 0 14
Rheumatoid Arthritis (RA) 56 16 72
Rosacea 7 0 7
Sacroiliac Joint Disease (SI) 1 0 1
Sarcoidosis 4 0 4
Sarcoma 1 1 2
Scheuermann's Kyphosis 2 0 2
Schizophrenia* 11 13 24
Sciatica 24 0 24
Scleroderma 1 1 2
Sclerosing Peritonitis (SP) 2 0 2
Scoliosis 36 6 42
Secondary Adrenal insufficiency 2 0 2
Secondary Immune Deficiency (SID) 2 0 2
Sensory Processing Disorder (SPD) 4 0 4
Sepsis 1 0 1
Shingles (Herpes Zoster) 2 0 2
Shoulder Replacement 0 1 1
Sickle Cell Disease (SCD)* 2 0 2
Sinusitis 10 0 10
Sjogren's Syndrome (SjS, SS) 6 3 9
Skin Cancer 6 5 11
Sleep Apnea (OSA) 51 6 57
Sleep Disorder 29 2 31
Spasticity 1 0 1
Speech Impairment 4 1 5
Spina Bifida (SB) 5 0 5
Spinal Cord 33 0 33
Spinal Muscular Atrophy (SMA) 2 3 5
Sprengel Deformity 1 0 1
Stomach Cancer 4 2 6
Stomach Ulcer 16 0 16
Stroke 29 30 59
Synesthesia 1 0 1
Syringomyelia 6 0 6
Tarlov Cysts 1 0 1
Temporomandibular joint (TMJ) 4 0 4
Tendonitis 19 0 19
Testicular Cancer 1 0 1
Thalassemia 3 1 4
Thoracic Outlet Syndrome (TOS) 2 0 2
Throat Cancer 2 4 6
Thrombocytopenia (TCP) 1 0 1
Thrombotic Thrombocytopenic Purpura (TTP) 1 0 1
Thyroid Cancer 5 0 5
Thyroid Eye Disease (TED) 0 1 1
Thyroid Nodule 10 0 10
Thyroidectomy 2 0 2
Tics 2 0 2
Tracheomalacia 0 1 1
Transient Global Amnesia (TGA) 1 0 1
Traumatic Brain Injury (TBI) 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) 3 0 3
Urticaria (Hives) 3 0 3
Uterine Cancer 8 2 10
Uterine Fibroids 5 0 5
Uterine Polyps 0 1 1
Uveitis 4 1 5
Vaginismus 2 0 2
Varicose Veins 9 0 9
Vasculitis 3 0 3
Vertebral Artery Dissection (VAD) 1 0 1
Vertigo 2 0 2
Vision Impairment 45 14 59
Vitamin B12 Deficiency 1 0 1
Vitamin D Deficiency 1 0 1
Vitiligo 9 0 9
Von Willebrand Disease (VWD) 1 0 1
Vulvodynia 2 0 2
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 1 0 1
Wegener's Granulomatosis with Polyangiitis (GPA) 1 0 1
Wheelchair 29 32 61
Wilson's Disease (hepatolenticular degeneration) 0 1 1
Wolff-Parkinson-White (WPW) Syndrome 0 1 1
Italy
Disease/Condition Patients Caregivers Total
Achalasia 4 1 5
Acne 19 2 21
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 3 0 3
Addiction 28 6 34
Addison's Disease (Adrenal insufficiency) 8 1 9
Adenomyosis 31 0 31
Adhesive Capsulitis (Frozen Shoulder) 7 0 7
Adrenal Cortical Carcinoma (ACC) 1 1 2
Agenesis of the Corpus Callosum (ACC) 0 1 1
Allergies 296 10 306
Alopecia 33 0 33
Alpha 1 Antitrypsin Deficiency (A1AD) 2 0 2
Alternating Hemiplegia of Childhood (AHC) 1 0 1
Alzheimer's Disease (AD) 10 200 210
Amplified Musculoskeletal Pain Syndrome 9 1 10
Amputation 2 5 7
Amyloidosis 2 1 3
Amyotrophic Lateral Sclerosis (ALS) 2 18 20
Anal Cancer 0 2 2
Anemia 123 10 133
Aneurysm 24 3 27
Ankylosing Spondylitis (AS) 42 1 43
Anosmia (loss of smell) 3 0 3
Antiphospholipid Syndrome (APS) 13 2 15
Antisynthetase Syndrome 1 0 1
Anxiety 443 23 466
Aortic Disease 16 13 29
Aphasia 1 2 3
Aplastic Anemia (AA) 2 0 2
Appendix Cancer 1 0 1
Arachnoiditis 1 1 2
Arteriovenous Malformation (AVM) 5 1 6
Arthrogryposis Multiplex Congenita (AMC) 1 0 1
Asthma 310 20 330
Ataxia 3 3 6
Atrial Fibrillation (AFIB) 38 24 62
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 86 19 105
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 2 0 2
Autism 29 46 75
Autoimmune Disease 33 2 35
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 3 12
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 37 3 40
Beta Thalassemia (Cooley s Anemia) 9 2 11
Bile Duct Cancer (Cholangiocarcinoma) 1 1 2
Bipolar 143 21 164
Bladder Cancer 10 4 14
Blood Cancer 5 2 7
Blood Clot 14 3 17
Blood Clotting Disorder 13 1 14
Bone Cancer 5 2 7
Borderline Personality Disorder (BPD) 72 6 78
Brain Aneurysm 19 3 22
Brain Cancer 2 1 3
Brain Damage 3 2 5
Brain Tumor 18 4 22
BRCA Mutation 3 0 3
Breast Cancer (BC) 126 16 142
Bronchiectasis 7 0 7
Bronchitis 33 3 36
Bronchopulmonary Dysplasia (BPD) 2 0 2
Bulging Disc 29 0 29
Bursitis 7 0 7
Campomelic Dysplasia 1 0 1
Cancer 239 58 297
Candidiasis (Yeast Infection) 16 0 16
Carcinoid Cancer 2 0 2
Carcinoma 36 7 43
Carnitine Deficiency 1 0 1
Carpal Tunnel Syndrome (CTS) 35 1 36
Castleman Disease (CD) 0 4 4
Catheter 1 0 1
Cauda Equina Syndrome 4 0 4
Celiac Disease (CCD) 77 8 85
Cellulitis 3 0 3
Central Pain Syndrome (CPS) 2 0 2
Cerebral Palsy (CP) 0 4 4
Cervical Cancer 6 0 6
Cervical Dystonia 7 0 7
Charge Syndrome 0 1 1
Chiari Malformation (CM) 16 3 19
Chronic Fatigue Syndrome (CFS, ME) 72 2 74
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 11 4 15
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 77 28 105
Chronic Pain 169 10 179
Chronic Venous Insufficiency (CVI) 34 7 41
Cleft 3 0 3
Clubfoot 3 3 6
Cluster Headache 33 0 33
Cognitive Impairment (CI) 1 4 5
Colon Polyps 3 0 3
Colonic Inertia 2 0 2
Color Blind 4 0 4
Colorectal (Colon) Cancer 22 7 29
Complex Regional Pain Syndrome (CRPS, RSD) 3 0 3
Congenital Adrenal Hyperplasia (CAH) 3 0 3
Congenital Myopathy 6 0 6
Constipation 21 5 26
Conversion Disorder (CD) 4 0 4
Coronavirus (COVID-19) 17 4 21
Costochondritis 1 0 1
Cowden Syndrome (CS) 2 0 2
Craniocervical Instability (CCI) 12 0 12
Crohn's Disease (CD) 47 10 57
Cushing's Disease (CS) 6 0 6
Cyclic Vomiting Syndrome (CVS) 3 0 3
Cystic Fibrosis (CF) 5 5 10
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) 31 6 37
Degenerative Disc Disease (DDD) 33 2 35
Deletion Duplication Syndrome 2 2 4
Depression (MDD) 465 44 509
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 7 0 7
Desmoid Tumor 1 0 1
Developmental Delay (DD) 0 3 3
Diabetes (DM) 625 183 808
Disabled 6 6 12
Disruptive Mood Dysregulation Disorder (DMDD) 2 0 2
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 5 0 5
Diverticulitis 50 4 54
Down Syndrome (DS) 0 7 7
Dry Mouth 1 0 1
Duodenitis 3 0 3
Dupuytren's Contracture 2 1 3
Dwarfism 2 1 3
Dysarthria (Slurred Speech) 0 1 1
Dysautonomia 9 3 12
Dyslexia 4 1 5
Dysmenorrhea (Painful Menstruation) 29 0 29
Dysphagia (Difficulty Swallowing) 16 9 25
Dystonia 4 1 5
Eating Disorder 80 3 83
Eczema (Atopic Dermatitis) 87 1 88
Edema 3 0 3
Ehlers-Danlos Syndrome (EDS) 11 0 11
Elephantiasis (Lymphatic Filariasis) 1 0 1
Empty Sella Syndrome (ESS) 1 1 2
Encephalitis 1 0 1
Endometrial Cancer 1 0 1
Endometriosis 167 1 168
Enlarged Spleen (Splenomegaly) 4 0 4
Eosinophilic Colitis (EC) 2 0 2
Eosinophilic Esophagitis (EOE) 7 1 8
Eosinophilic Gasteroenteritis (EG) 5 0 5
Epicondylitis (Tennis Elbow) 9 0 9
Epidermolysis Bullosa (EB) 4 0 4
Epilepsy 158 61 219
Epstein Barr Syndrome (EBV) 3 0 3
Erectile Dysfunction (ED) 12 0 12
Erythema Nodosum 2 0 2
Erythromelalgia 1 0 1
Esophageal Cancer 0 3 3
Esophageal Varices 3 0 3
Essential Thrombocythemia 4 1 5
Essential Tremor 10 4 14
Ewing's Sarcoma 2 0 2
Exocrine Pancreatic Insufficiency (EPI) 2 1 3
Familial Adenomatous Polyposis (FAP) 3 1 4
Familial Hypercholesterolemia (FH) 66 4 70
Familial Mediterranean Fever (FMF) 1 2 3
Feeding Tubes 1 0 1
Fetal Alcohol Syndrome (FAS) 1 0 1
Fibrocystic Breasts 9 0 9
Fibrodysplasia Ossificans Progressiva (FOP) 2 0 2
Fibromyalgia (FM) 525 7 532
Fibrosing Mediastinitis 1 0 1
Fibrous Dysplasia 2 0 2
Fistula 6 0 6
Fragile X Syndrome (FXS) 1 1 2
Friedreich's Ataxia (FA) 2 1 3
Functional Neurological Disorder (FND) 6 1 7
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) 5 0 5
Gall Stones 26 1 27
Ganglioneuroblastoma 0 1 1
Gastric Bypass 13 0 13
Gastric Dysmotility 2 1 3
Gastritis 129 6 135
Gastroesophageal Reflux Disease (GERD) 200 7 207
Gastrointestinal Stromal Tumor (GIST) 3 1 4
Gastroparesis (GP) 2 0 2
Gaucher Disease (GD) 1 0 1
Gender Dysphoria 6 0 6
Giant Cell Arteritis (GCA) 0 1 1
Glucose Transporter Deficiency (GLUT1DS) 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) 18 1 19
Guillain-Barre Syndrome (GBS) 2 2 4
Hashimoto's Disease (HT) 327 9 336
Head and Neck Cancer 1 2 3
Headache 125 3 128
Hearing Aid 10 4 14
Hearing Loss 96 27 123
Heart Disease 394 127 521
Hemangioma 1 0 1
Hemochromatosis (Iron Overload) 2 0 2
Hemolytic Disease of the Fetus and Newborn (HDFN) 1 0 1
Hemophilia 25 1 26
Hemorrhoids 46 2 48
Hepatitis 51 1 52
Hereditary Angioedema (HAE) 5 0 5
Hereditary Spastic Paraparesis (HSP) 3 4 7
Hereditary Spastic Paraplegia (HSP) 2 3 5
Hernia 200 7 207
Herpes (HSV) 11 0 11
Hidradenitis Suppurativa (HS) 19 0 19
High Blood Pressure (Hypertension, HBP) 732 114 846
High Cholesterol (Hyperlipidemia) 209 19 228
Hip Dysplasia 3 0 3
Hip Replacement 6 2 8
Hirschsprung's Disease (HD, HSCR) 1 0 1
Hirsutism 9 0 9
HIV 40 6 46
Hodgkins Lymphoma 11 2 13
Holoprosencephaly (HPE) 0 1 1
Homocystinuria (HCU) 1 0 1
Human Growth Hormone Deficiency (GHD) 13 5 18
Human Papillomavirus (Human Papillomavirus (HPV) 20 2 22
Huntington's Disease (HD) 1 3 4
Hydrocephalus 8 0 8
Hyperaldosteronism 2 0 2
Hyperemesis Gravidarum (HG, Morning Sickness) 3 0 3
Hyperhidrosis 11 1 12
Hyperkalemia 0 1 1
Hypermobility Syndrome 1 0 1
Hyperparathyroidism 11 1 12
Hypersomnia 6 0 6
Hyperthyroidism 66 4 70
Hypocalcemia 4 0 4
Hypoglycemia (Low Blood Sugar) 12 1 13
Hypohidrotic Ectodermal Dysplasia (HED) 3 0 3
Hypokalemia 4 1 5
Hypokalemic Periodic Paralysis 1 0 1
Hyponatremia 0 1 1
Hypoparathyroidism 10 0 10
Hypophosphatasia (HPP) 1 0 1
Hypoplasia of the Corpus Callosum 0 1 1
Hypothyroidism 414 16 430
Hypotonia 5 1 6
Hypoxic Ischemic Encephalopathy (HIE) 1 1 2
Hysterectomy 7 1 8
Ichthyosis 1 2 3
Immune Thrombocytopenic Purpura (ITP) 6 1 7
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 4 0 4
Incontinence 29 12 41
Incontinentia Pigmenti (IP) 1 0 1
Infertility 16 2 18
Insomnia 98 3 101
Intellectual Disability 1 14 15
Interstitial Cystitis (IC) 30 1 31
Interstitial Lung Disease (ILD) 3 1 4
Intracranial Hemorrhage (Brain Bleeds) 2 2 4
Intracranial Hypertension (IH, Pseudotumor Cerebri) 6 0 6
Irritable Bowel Syndrome (IBS) 155 3 158
Ischemic Colitis 1 0 1
Juvenile Arthritis (JA) 21 1 22
Kaposi Sarcoma (KS) 1 2 3
Keratosis Pilaris (follicular keratosis) 0 2 2
Kidney Disease 129 39 168
Klinefelter Syndrome (XXY Syndrome) 4 1 5
Klippel-Trenaunay Syndrome (KTS) 1 0 1
Knee Replacement 12 3 15
Lactose Intolerance 56 0 56
Larsen syndrome 1 0 1
Laryngeal Cancer 1 0 1
Learning Disability 1 4 5
Legg-Calve-Perthes Disease (LCPD) 1 0 1
Leiomyosarcoma 2 0 2
Leukemia 17 11 28
Leukopenia 1 0 1
Lichen Planus 9 1 10
Lichen Sclerosis (LS) 11 0 11
Lipedema 11 1 12
Lipodystrophy 1 0 1
Liposarcoma 1 1 2
Livedo Reticularis (LR) 1 0 1
Liver Cancer 3 7 10
Liver Disease (not hepatitis) 59 9 68
Loin Pain Hematuria Syndrome (LPHS) 1 0 1
Loss of Mobility 11 7 18
Low Blood Pressure (Hypotension) 59 3 62
Low Testosterone 1 0 1
Lung Cancer 18 9 27
Lung Disease 31 15 46
Lupus 73 5 78
Lyme Disease 5 0 5
Lymphedema 22 2 24
Lymphocytic Colitis 3 0 3
Lymphoma 3 1 4
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 1 1 2
Macular Degeneration 13 6 19
Malabsorption 8 2 10
Marfan Syndrome (MFS) 2 0 2
Mastocytosis (Mast Cell Activating Disease, MCAD) 6 3 9
Memory Loss 6 9 15
Meniere's Disease (MD) 9 0 9
Menopause 43 0 43
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 5 0 5
Mental Illness 9 6 15
Mesothelioma 0 1 1
Metabolic Syndrome 45 2 47
Metatarsalgia 1 0 1
Microcephaly 0 1 1
Microscopic Colitis 5 0 5
Migraine 281 7 288
Mitochondrial Disease 2 1 3
Mixed Connective Tissue Disease (MCTD) 6 0 6
Moebius Syndrome 1 0 1
Monoclonal gammopathy of undetermined significance (MGUS) 10 0 10
Mood Disorder 67 2 69
MTHFR 19 1 20
Multiple Endocrine Neoplasia (MEN) 4 0 4
Multiple Myeloma (MM) 9 3 12
Multiple Sclerosis (MS) 179 29 208
Multiple System Atrophy (MSA) 1 0 1
Muscle Spasms 12 1 13
Muscular Dystrophy (MD) 14 4 18
Myasthenia Gravis (MG) 31 4 35
Mycobacterium Avium Complex (MAC) 1 0 1
Myelodysplastic syndrome (MDS) 3 2 5
Myelofibrosis 1 0 1
Myopathy 10 2 12
Myositis 4 0 4
Narcolepsy 8 1 9
Nasal Polyps 13 0 13
Neck Cancer 1 0 1
Neck Surgery 1 0 1
Neuralgia 18 3 21
Neuroblastoma 1 0 1
Neuroendocrine Cancer (NET) 2 1 3
Neurofibromatosis (NF) 10 2 12
Neurogenic Bladder 18 2 20
Neurogenic Bowel 3 0 3
Neuromyelitis optica (NMO) 3 0 3
Neuropathy 103 15 118
Neutropenia 2 1 3
Non-Hodgkin's Lymphoma (NHL) 18 3 21
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 15 1 16
Obesity 242 13 255
Obsessive Compulsive Disorder (OCD) 45 7 52
Oppositional Defiant Disorder (ODD) 0 5 5
Organ Transplant 22 3 25
Osteoarthritis (OA) 219 32 251
Osteogenesis Imperfecta (OI) 1 1 2
Osteomyelitis (OM) 4 1 5
Osteopenia 25 0 25
Osteoporosis 113 16 129
Ostomy 3 1 4
Ovarian Cancer 9 0 9
Ovarian Cyst 21 0 21
Overactive Bladder (OAB) 12 2 14
Paget's 2 1 3
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 6 4 10
Pancreatitis 13 2 15
Paraganglioma 1 1 2
Paralysis 18 11 29
Parkinson's Disease (PD) 32 49 81
Paroxysmal Nocturnal Hemoglobinuria (PNH) 1 0 1
Pelvic Congestion Syndrome (PCS) 2 0 2
Pelvic Floor Dysfunction 5 0 5
Pelvic Inflammatory Disease (PID) 3 0 3
Pemphigus / Pemphigoid 5 0 5
Periodic Limb Movement Disorder (PLMD) 2 2 4
Periodontitis (Gum Disease) 18 1 19
Personality Disorder 20 3 23
Phenylketonuria (PKU) 0 1 1
Pheochromocytoma (PCC) 2 0 2
Pituitary Tumor 16 1 17
Plantar Fasciitis (PF) 7 0 7
Pneumonia 11 1 12
Poland Syndrome 1 0 1
Polio 4 5 9
Polycystic Ovarian Syndrome (PCOS) 123 2 125
Polycythemia Vera (PV) 12 1 13
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) 38 1 39
Pre-exposure Prophylaxis (PrEP) 2 0 2
Precocious Puberty 1 1 2
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) 2 0 2
Premenstrual Dysphoric Disorder (PMDD) 9 0 9
Primary Immunodeficiency (PID) 8 0 8
Progressive Multifocal Leukoencephalopathy (PML) 1 0 1
Progressive Supranuclear Palsy (PSP) 0 3 3
Prolactinoma 3 0 3
Prostate Cancer 12 5 17
Protein Deficiency 3 1 4
Proteinuria (Protein in Urine) 1 0 1
Prurigo Nodularis (PN) 3 0 3
Psoriasis 221 18 239
Psoriatic Arthritis (PsA) 47 4 51
Pulmonary Arterial Hypertension (PAH) 13 2 15
Pulmonary Embolism (PE) 23 6 29
Pulmonary Fibrosis (PF) 12 2 14
Pyloric Stenosis (Gastric Outlet Obstruction) 4 0 4
Pyoderma Gangrenosum (PG) 1 1 2
Raynaud's Syndrome 36 1 37
Rectal Cancer (CRC) 2 1 3
Rectocele 7 0 7
Renal Cell Carcinoma (Kidney Cancer, RCC) 13 2 15
Respiratory Disease 1 0 1
Restless Leg Syndrome (RLS) 27 3 30
Retroperitoneal Fibrosis 0 1 1
Rheumatoid Arthritis (RA) 175 28 203
Rickets (Osteomalacia) 1 0 1
Rosacea 8 0 8
Sacroiliac Joint Disease (SI) 3 2 5
Sarcoidosis 14 0 14
Sarcoma 2 0 2
Scheuermann's Kyphosis 5 0 5
Schizencephaly 0 1 1
Schizophrenia* 21 20 41
Sciatica 28 1 29
Scleroderma 23 3 26
Scoliosis 73 5 78
Secondary Adrenal insufficiency 1 1 2
Secondary Immune Deficiency (SID) 10 1 11
Sensory Processing Disorder (SPD) 1 0 1
Sepsis 1 3 4
Shingles (Herpes Zoster) 10 1 11
Short Bowel Syndrome (SBS, Short Gut) 1 1 2
Shoulder Replacement 1 0 1
Sickle Cell Disease (SCD)* 5 0 5
Sinusitis 49 1 50
Sjogren's Syndrome (SjS, SS) 47 1 48
Skin Cancer 33 5 38
Sleep Apnea (OSA) 74 3 77
Sleep Disorder 53 4 57
Small Intestinal Bacterial Overgrowth (SIBO) 5 1 6
Spasticity 0 1 1
Speech Impairment 1 2 3
Sphincter of Oddi Dysfunction 1 1 2
Spina Bifida (SB) 8 2 10
Spinal Cancer 0 1 1
Spinal Cord 134 7 141
Spinal Muscular Atrophy (SMA) 1 2 3
Stomach Cancer 2 3 5
Stomach Ulcer 21 4 25
Stroke 40 32 72
Subglottic Stenosis (SGS) 2 0 2
Syncope 2 1 3
Syringomyelia 12 1 13
Tarlov Cysts 5 1 6
Tay Sachs (TSD) 0 1 1
Temporomandibular joint (TMJ) 7 0 7
Tendonitis 33 0 33
Testicular Cancer 1 1 2
Thalassemia 21 3 24
Thoracic Outlet Syndrome (TOS) 4 0 4
Throat Cancer 1 1 2
Thrombocytopenia (TCP) 14 3 17
Thyroid Cancer 27 1 28
Thyroid Eye Disease (TED) 5 0 5
Thyroid Nodule 73 2 75
Thyroidectomy 10 1 11
Tongue Cancer 0 1 1
Tourette Syndrome (TS) 3 4 7
Transient Global Amnesia (TGA) 3 2 5
Traumatic Brain Injury (TBI) 4 3 7
Trichotillomania (TTM) 4 1 5
Trigger Finger (Stenosing Tenosynovitis) 6 0 6
Tuberculosis 2 0 2
Ulcerative Colitis (UC) 49 3 52
Undifferentiated Connective Tissue Disease (UCTD) 31 0 31
Urea Cycle Disorder (UCD) 0 1 1
Urethral Prolapse 1 0 1
Urinary Tract Infection (UTI) 9 0 9
Urticaria (Hives) 29 0 29
Uterine Cancer 6 0 6
Uterine Fibroids 54 0 54
Uterine Polyps 9 0 9
Uveitis 3 0 3
VACTERL Syndrome 0 1 1
Vaginismus 1 0 1
Varicose Veins 24 3 27
Vasculitis 27 5 32
Velopharyngeal Insufficiency (VPI) 1 0 1
Vertigo 22 0 22
Vision Impairment 211 38 249
Vitamin B12 Deficiency 10 0 10
Vitamin D Deficiency 33 2 35
Vitiligo 27 1 28
Vocal Cord Dysfunction (VCD) 2 1 3
Von Willebrand Disease (VWD) 1 1 2
Vulvar Cancer 3 0 3
Vulvodynia 22 0 22
Waldenstrom s Macroglobulinemia(WM, Lymphoplasmacytic Lymphoma) 2 0 2
Wegener's Granulomatosis with Polyangiitis (GPA) 6 1 7
Wheelchair 38 38 76
Wolff-Parkinson-White (WPW) Syndrome 3 2 5
Spain
Disease/Condition Patients Caregivers Total
Acne 21 1 22
Acoustic Neuroma (Vestibula Schwannoma) 1 0 1
Acromegaly 1 1 2
Addiction 27 8 35
Addison's Disease (Adrenal insufficiency) 7 0 7
Adenomyosis 4 0 4
Adhesive Capsulitis (Frozen Shoulder) 5 0 5
Agenesis of the Corpus Callosum (ACC) 0 1 1
Allergies 232 13 245
Alopecia 10 0 10
Alpha 1 Antitrypsin Deficiency (A1AD) 3 0 3
Alzheimer's Disease (AD) 13 311 324
Amplified Musculoskeletal Pain Syndrome 3 1 4
Amputation 6 7 13
Amyloidosis 1 0 1
Amyotrophic Lateral Sclerosis (ALS) 1 12 13
Anal Cancer 2 1 3
Anemia 76 13 89
Aneurysm 6 2 8
Anhidrosis (Hypohydrosis) 1 0 1
Ankylosing Spondylitis (AS) 28 1 29
Anosmia (loss of smell) 1 0 1
Antiphospholipid Syndrome (APS) 15 1 16
Anxiety 507 50 557
Aortic Disease 4 2 6
Aphasia 0 2 2
Aplastic Anemia (AA) 2 1 3
Arachnoid Cyst 5 0 5
Arteriovenous Malformation (AVM) 2 0 2
Arthrogryposis Multiplex Congenita (AMC) 1 2 3
Asthma 255 31 286
Ataxia 2 3 5
Atrial Fibrillation (AFIB) 10 2 12
Atrophic Vaginitis 1 0 1
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 112 35 147
Atypical Hemolytic Uremic Syndrome (aHUS) 1 0 1
Auditory Processing Disorder (APD) 2 1 3
Autism 26 47 73
Autoimmune Disease 10 3 13
Autoimmune Encephalitis (AE) 1 1 2
Avascular Necrosis (AVN, Osteonecrosis) 5 0 5
Barrett's Esophagus 4 0 4
Behcet's Disease (BD) 7 0 7
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 11 3 14
Beta Thalassemia (Cooley s Anemia) 3 1 4
Bile Acid Malabsorption (BAD) 2 1 3
Bipolar 77 17 94
Bladder Cancer 4 4 8
Blood Cancer 2 1 3
Blood Clot 3 2 5
Blood Clotting Disorder 5 2 7
Bone Cancer 3 3 6
Borderline Personality Disorder (BPD) 107 6 113
Brain Aneurysm 9 3 12
Brain Cancer 2 3 5
Brain Damage 4 2 6
Brain Tumor 5 7 12
BRCA Mutation 2 0 2
Breast Cancer (BC) 68 17 85
Breast Cancer in Men 2 6 8
Bronchiectasis 4 0 4
Bronchitis 41 13 54
Bronchopulmonary Dysplasia (BPD) 0 1 1
Bulging Disc 10 0 10
Bursitis 8 0 8
Calcinosis 1 0 1
Cancer 143 90 233
Candidiasis (Yeast Infection) 10 1 11
Carcinoma 4 1 5
Cardiofaciocutaneous Syndrome (CFC syndrome) 0 1 1
Carpal Tunnel Syndrome (CTS) 35 0 35
Catheter 0 1 1
Celiac Disease (CCD) 26 4 30
Cellulitis 2 0 2
Central Pain Syndrome (CPS) 2 1 3
Cerebellar Atrophy 1 0 1
Cerebral Cavernous Malformations (CCMs) 2 1 3
Cerebral Palsy (CP) 5 9 14
Cervical Cancer 7 0 7
Cervical Dystonia 4 0 4
Chiari Malformation (CM) 6 1 7
Chronic Fatigue Syndrome (CFS, ME) 123 4 127
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 2 1 3
Chronic Intestinal Pseudo-obstruction (CIPO) 1 0 1
Chronic obstructive pulmonary disease (COPD) 53 22 75
Chronic Pain 186 19 205
Chronic Venous Insufficiency (CVI) 11 9 20
Cleft 1 0 1
Clubfoot 1 0 1
Cluster Headache 6 0 6
Cognitive Impairment (CI) 3 10 13
Colon Polyps 9 2 11
Color Blind 1 0 1
Colorectal (Colon) Cancer 13 17 30
Complex Regional Pain Syndrome (CRPS, RSD) 9 0 9
Congenital Adrenal Hyperplasia (CAH) 4 0 4
Constipation 10 3 13
Conversion Disorder (CD) 1 0 1
Coronavirus (COVID-19) 35 7 42
Costochondritis 2 0 2
Craniocervical Instability (CCI) 4 0 4
Crohn's Disease (CD) 35 7 42
Cushing's Disease (CS) 5 1 6
Cystic Fibrosis (CF) 5 1 6
Cytomegalovirus (CMV) 4 1 5
Deep Vein Thrombosis (DVT) 16 9 25
Degenerative Disc Disease (DDD) 23 2 25
Deletion Duplication Syndrome 0 4 4
Depression (MDD) 544 95 639
Dercum's Disease (adiposis dolorosa) 2 0 2
Dermatomyositis (DM) 4 2 6
Developmental Delay (DD) 0 16 16
Diabetes (DM) 346 226 572
Disabled 5 6 11
Disruptive Mood Dysregulation Disorder (DMDD) 2 0 2
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 9 2 11
Diverticulitis 14 4 18
Down Syndrome (DS) 0 6 6
Dry Mouth 1 0 1
Dupuytren's Contracture 3 0 3
Dwarfism 1 0 1
Dysarthria (Slurred Speech) 1 1 2
Dysautonomia 11 1 12
Dyslexia 5 3 8
Dysmenorrhea (Painful Menstruation) 16 0 16
Dysphagia (Difficulty Swallowing) 7 8 15
Dystonia 0 2 2
Eating Disorder 67 4 71
Eczema (Atopic Dermatitis) 84 13 97
Edema 3 2 5
Ehlers-Danlos Syndrome (EDS) 14 0 14
Elephantiasis (Lymphatic Filariasis) 0 2 2
Empty Sella Syndrome (ESS) 2 0 2
Encephalocele 1 0 1
Endometrial Cancer 2 1 3
Endometriosis 64 0 64
Enlarged Spleen (Splenomegaly) 1 0 1
Eosinophilic Colitis (EC) 0 1 1
Eosinophilic Esophagitis (EOE) 6 0 6
Eosinophilic Gasteroenteritis (EG) 1 1 2
Epicondylitis (Tennis Elbow) 7 0 7
Epidermolysis Bullosa (EB) 1 0 1
Epilepsy 86 85 171
Erectile Dysfunction (ED) 3 0 3
Erythema Nodosum 1 0 1
Esophageal Varices 2 0 2
Essential Thrombocythemia 0 1 1
Essential Tremor 3 0 3
Failure to Thrive (FTT) 0 1 1
Familial Hypercholesterolemia (FH) 27 5 32
Familial Mediterranean Fever (FMF) 1 1 2
Feeding Tubes 0 3 3
Fibrocystic Breasts 6 0 6
Fibrodysplasia Ossificans Progressiva (FOP) 1 1 2
Fibromuscular Dysplasia (FMD) 2 0 2
Fibromyalgia (FM) 458 22 480
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 1 4
Gall Stones 6 1 7
Gastric Bypass 2 0 2
Gastric Dysmotility 1 0 1
Gastritis 50 2 52
Gastroesophageal Reflux Disease (GERD) 29 3 32
Gastrointestinal Stromal Tumor (GIST) 1 0 1
Gastroparesis (GP) 2 0 2
Gaucher Disease (GD) 1 0 1
Gender Dysphoria 2 0 2
Glucose Transporter Deficiency (GLUT1DS) 0 1 1
Gluten Intolerance 13 1 14
Glycogen Storage Disease (GSD) 0 1 1
Goiter 1 0 1
Gout 7 3 10
Grave's Disease (GD) 4 0 4
Guillain-Barre Syndrome (GBS) 4 1 5
Hansen's Disease (Leprosy) 1 0 1
Hashimoto's Disease (HT) 37 1 38
Head and Neck Cancer 0 1 1
Headache 65 7 72
Hearing Aid 2 1 3
Hearing Loss 47 16 63
Heart Disease 131 103 234
Hemangioma 3 0 3
Hemochromatosis (Iron Overload) 4 1 5
Hemophilia 8 2 10
Hemorrhoids 6 1 7
Hepatitis 21 5 26
Hereditary Angioedema (HAE) 3 1 4
Hereditary Spastic Paraparesis (HSP) 2 0 2
Hereditary Spastic Paraplegia (HSP) 0 1 1
Hernia 136 11 147
Herpes (HSV) 7 3 10
Hidradenitis Suppurativa (HS) 11 2 13
High Blood Pressure (Hypertension, HBP) 369 154 523
High Cholesterol (Hyperlipidemia) 133 46 179
Hip Dysplasia 6 4 10
Hip Replacement 4 6 10
Hirsutism 5 0 5
HIV 66 1 67
Hodgkins Lymphoma 2 0 2
Holoprosencephaly (HPE) 1 0 1
Human Growth Hormone Deficiency (GHD) 5 0 5
Human Papillomavirus (Human Papillomavirus (HPV) 22 0 22
Huntington's Disease (HD) 1 1 2
Hydrocephalus 3 7 10
Hyperaldosteronism 1 0 1
Hypereosinophilic Syndrome (HES) 0 1 1
Hyperhidrosis 12 0 12
Hypermobility Syndrome 9 1 10
Hyperparathyroidism 13 2 15
Hypersomnia 6 2 8
Hyperthyroidism 52 7 59
Hypocalcemia 4 0 4
Hypoglycemia (Low Blood Sugar) 10 4 14
Hypokalemia 1 1 2
Hyponatremia 0 1 1
Hypoparathyroidism 3 0 3
Hypothyroidism 256 17 273
Hypotonia 0 7 7
Hypoxic Ischemic Encephalopathy (HIE) 2 0 2
Hysterectomy 7 0 7
Ichthyosis 0 1 1
Immune Thrombocytopenic Purpura (ITP) 1 2 3
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 1 0 1
Incontinence 17 11 28
Infertility 4 0 4
Insomnia 83 4 87
Intellectual Disability 1 12 13
Interstitial Cystitis (IC) 7 0 7
Interstitial Lung Disease (ILD) 1 2 3
Intracranial Hemorrhage (Brain Bleeds) 0 3 3
Intracranial Hypertension (IH, Pseudotumor Cerebri) 8 2 10
Irritable Bowel Syndrome (IBS) 106 5 111
Juvenile Arthritis (JA) 8 0 8
Keratosis Pilaris (follicular keratosis) 1 1 2
Kidney Disease 58 33 91
Klinefelter Syndrome (XXY Syndrome) 1 0 1
Knee Replacement 11 11 22
Lactose Intolerance 25 2 27
Lambert-Eaton myasthenic syndrome (LEMS) 2 0 2
Langerhans Cell Histiocytosis (LCH) 2 0 2
Learning Disability 1 3 4
Leukemia 10 5 15
Leukocytosis 2 1 3
Leukodystrophy 0 1 1
Leukopenia 2 0 2
Lichen Planus 7 0 7
Lichen Sclerosis (LS) 2 0 2
Lipedema 2 0 2
Lipodystrophy 1 0 1
Lissencephaly 0 1 1
Liver Cancer 3 2 5
Liver Disease (not hepatitis) 44 6 50
Loin Pain Hematuria Syndrome (LPHS) 15 1 16
Loss of Mobility 13 26 39
Low Blood Pressure (Hypotension) 12 2 14
Low Testosterone 2 0 2
Lung Cancer 11 10 21
Lung Disease 26 9 35
Lupus 58 6 64
Lyme Disease 2 0 2
Lymphedema 8 2 10
Lymphocytic Colitis 2 0 2
Lymphoma 5 2 7
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) 6 8 14
Macular Degeneration 3 3 6
Mastocytosis (Mast Cell Activating Disease, MCAD) 6 0 6
May Thurner Syndrome 2 0 2
Median arcuate ligament syndrome (MALS) 1 1 2
Memory Loss 10 18 28
Meniere's Disease (MD) 8 0 8
Menopause 24 0 24
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) 4 0 4
Mental Illness 15 13 28
Mesothelioma 1 1 2
Metabolic Syndrome 2 0 2
Metatarsalgia 1 0 1
Microcephaly 0 1 1
Migraine 317 13 330
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 1 2
Mood Disorder 25 6 31
Mucopolysaccharidoses (MPS) 0 1 1
Multiple Endocrine Neoplasia (MEN) 1 0 1
Multiple Myeloma (MM) 4 5 9
Multiple Sclerosis (MS) 89 25 114
Muscle Spasms 5 2 7
Muscular Dystrophy (MD) 11 4 15
Myasthenia Gravis (MG) 8 1 9
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD) 0 1 1
Myelodysplastic syndrome (MDS) 2 0 2
Myelofibrosis 2 0 2
Myopathy 5 0 5
Myositis 1 0 1
Narcolepsy 6 2 8
Nasal Polyps 1 0 1
Neck Cancer 1 1 2
Neuralgia 25 1 26
Neuroendocrine Cancer (NET) 1 0 1
Neurofibromatosis (NF) 10 1 11
Neurogenic Bladder 6 3 9
Neuropathy 37 4 41
Neutropenia 0 1 1
Non-Hodgkin's Lymphoma (NHL) 4 2 6
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 1 2 3
Obesity 145 26 171
Obsessive Compulsive Disorder (OCD) 38 9 47
Oppositional Defiant Disorder (ODD) 1 2 3
Oral Cancer 1 1 2
Organ Transplant 8 5 13
Osteoarthritis (OA) 265 68 333
Osteogenesis Imperfecta (OI) 0 1 1
Osteomyelitis (OM) 1 0 1
Osteopenia 11 0 11
Osteoporosis 57 22 79
Ovarian Cancer 9 3 12
Ovarian Cyst 13 1 14
Overactive Bladder (OAB) 10 2 12
Paget's 3 0 3
Palmoplantar Pustulosis 1 0 1
Pancreatic Cancer 4 1 5
Pancreatitis 10 0 10
Paralysis 6 23 29
Parkinson's Disease (PD) 20 72 92
Paroxysmal Nocturnal Hemoglobinuria (PNH) 2 1 3
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 1 0 1
Pelvic Congestion Syndrome (PCS) 1 0 1
Pelvic Floor Dysfunction 1 0 1
Pelvic Inflammatory Disease (PID) 2 0 2
Pemphigus / Pemphigoid 2 0 2
Periodic Limb Movement Disorder (PLMD) 2 1 3
Periodontitis (Gum Disease) 5 1 6
Periventricular Leukomalacia (PVL) 1 0 1
Persistent Genital Arousal Disorder 1 0 1
Personality Disorder 26 6 32
Pituitary Tumor 4 0 4
Plantar Fasciitis (PF) 16 0 16
Pneumonia 9 3 12
Polio 4 1 5
Polycystic Ovarian Syndrome (PCOS) 48 1 49
Polycythemia Vera (PV) 0 1 1
Polymyalgia Rheumatica (PMR) 5 2 7
Post-Polio Syndrome (PPS) 3 1 4
Posttraumatic Stress Disorder (PTSD) 30 3 33
Pre-exposure Prophylaxis (PrEP) 1 1 2
Precocious Puberty 1 0 1
Premenstrual Dysphoric Disorder (PMDD) 7 0 7
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 14 8 22
Protein Deficiency 1 0 1
Proteinuria (Protein in Urine) 0 1 1
Prurigo Nodularis (PN) 2 0 2
Psoriasis 85 13 98
Psoriatic Arthritis (PsA) 18 2 20
Ptosis (Drooping eye, Blepharoptosis) 3 1 4
Pulmonary Arterial Hypertension (PAH) 11 4 15
Pulmonary Embolism (PE) 5 5 10
Pulmonary Fibrosis (PF) 9 2 11
Raynaud's Syndrome 32 1 33
Rectal Cancer (CRC) 1 2 3
Rectocele 1 0 1
Renal Cell Carcinoma (Kidney Cancer, RCC) 3 1 4
Respiratory Syncytial Virus (RSV) Infection 0 1 1
Restless Leg Syndrome (RLS) 26 0 26
Retroperitoneal Fibrosis 1 0 1
Rheumatoid Arthritis (RA) 166 39 205
Rosacea 7 0 7
Sacroiliac Joint Disease (SI) 4 0 4
Sarcoidosis 8 1 9
Sarcoma 1 0 1
Scheuermann's Kyphosis 5 0 5
Schizophrenia* 28 33 61
Sciatica 27 1 28
Scleroderma 11 0 11
Sclerosing Peritonitis (SP) 1 0 1
Scoliosis 89 9 98
Secondary Adrenal insufficiency 7 4 11
Sensory Processing Disorder (SPD) 2 0 2
Shingles (Herpes Zoster) 5 0 5
Short Bowel Syndrome (SBS, Short Gut) 1 0 1
Sinusitis 17 1 18
Sjogren's Syndrome (SjS, SS) 19 1 20
Skin Cancer 13 4 17
Sleep Apnea (OSA) 57 6 63
Sleep Disorder 34 5 39
Small for Gestational Age SGA) 0 1 1
Small Intestinal Bacterial Overgrowth (SIBO) 6 1 7
Spasticity 0 2 2
Speech Impairment 3 3 6
Sphincter of Oddi Dysfunction 0 1 1
Spina Bifida (SB) 11 2 13
Spinal Cord 189 17 206
Spinal Muscular Atrophy (SMA) 5 2 7
Stomach Cancer 1 4 5
Stomach Ulcer 7 2 9
Stroke 38 49 87
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 3 0 3
Temporomandibular joint (TMJ) 9 1 10
Tendonitis 43 0 43
Thalassemia 8 1 9
Thoracic Outlet Syndrome (TOS) 1 0 1
Throat Cancer 2 0 2
Thrombocytopenia (TCP) 3 0 3
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
Tracheomalacia 0 1 1
Transient Global Amnesia (TGA) 0 2 2
Traumatic Brain Injury (TBI) 0 1 1
Trichotillomania (TTM) 2 0 2
Trigger Finger (Stenosing Tenosynovitis) 3 0 3
Tuberculosis 3 0 3
Ulcerative Colitis (UC) 23 3 26
Urethral Prolapse 1 0 1
Urinary Tract Infection (UTI) 7 6 13
Urticaria (Hives) 14 1 15
Usher Syndrome 2 0 2
Uterine Cancer 7 0 7
Uterine Fibroids 9 0 9
Uterine Polyps 2 0 2
Uveitis 2 0 2
Vaginismus 1 0 1
Varicose Veins 18 4 22
Vasculitis 4 0 4
Velopharyngeal Insufficiency (VPI) 1 0 1
Vertigo 23 7 30
Vision Impairment 103 42 145
Vitamin B12 Deficiency 6 1 7
Vitamin D Deficiency 12 1 13
Vitiligo 6 1 7
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 13 40 53
Wilson's Disease (hepatolenticular degeneration) 1 0 1
Wolff-Parkinson-White (WPW) Syndrome 1 3 4

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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