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.
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
| Disease/Condition | Patients | Caregivers | Total | |
| ABCD Syndrome | 2 | 2 | 4 | |
| Achalasia | 31 | 5 | 36 | |
| Acne | 173 | 15 | 188 | |
| Acoustic Neuroma (Vestibula Schwannoma) | 14 | 5 | 19 | |
| Acromegaly | 26 | 5 | 31 | |
| Adams-Oliver Syndrome (AOS) | 1 | 3 | 4 | |
| Addiction | 389 | 66 | 455 | |
| Addison's Disease (Adrenal insufficiency) | 213 | 56 | 269 | |
| Adenomyosis | 47 | 1 | 48 | |
| Adhesive Capsulitis (Frozen Shoulder) | 21 | 5 | 26 | |
| Adrenal Cortical Carcinoma (ACC) | 4 | 2 | 6 | |
| Agenesis of the Corpus Callosum (ACC) | 5 | 27 | 32 | |
| Aicardi Syndrome | 1 | 8 | 9 | |
| Albinism | 18 | 19 | 37 | |
| Alkaptonuria | 2 | 2 | 4 | |
| Allergies | 1299 | 408 | 1707 | |
| Alopecia | 105 | 19 | 124 | |
| Alpha 1 Antitrypsin Deficiency (A1AD) | 85 | 15 | 100 | |
| Alternating Hemiplegia of Childhood (AHC) | 0 | 2 | 2 | |
| Alzheimer's Disease (AD) | 112 | 1226 | 1338 | |
| Amniotic Band Syndrome | 2 | 0 | 2 | |
| Amplified Musculoskeletal Pain Syndrome | 8 | 4 | 12 | |
| Amputation | 63 | 58 | 121 | |
| Amyloidosis | 22 | 4 | 26 | |
| Amyotrophic Lateral Sclerosis (ALS) | 86 | 98 | 184 | |
| Anal Cancer | 83 | 4 | 87 | |
| Anemia | 1044 | 90 | 1134 | |
| Aneurysm | 43 | 15 | 58 | |
| Anhidrosis (Hypohydrosis) | 2 | 3 | 5 | |
| Ankylosing Spondylitis (AS) | 422 | 36 | 458 | |
| Anosmia (loss of smell) | 7 | 0 | 7 | |
| Anoxic Brain Injury | 6 | 10 | 16 | |
| Antiphospholipid Syndrome (APS) | 113 | 7 | 120 | |
| Antisynthetase Syndrome | 3 | 0 | 3 | |
| Anxiety | 5592 | 695 | 6287 | |
| Aortic Disease | 86 | 34 | 120 | |
| Aphantasia | 4 | 0 | 4 | |
| Aphasia | 14 | 11 | 25 | |
| Aplastic Anemia (AA) | 105 | 66 | 171 | |
| Appendix Cancer | 9 | 0 | 9 | |
| Apraxia | 6 | 56 | 62 | |
| Arachnoid Cyst | 10 | 6 | 16 | |
| Arachnoiditis | 23 | 3 | 26 | |
| Arteriovenous Malformation (AVM) | 26 | 8 | 34 | |
| Arthrogryposis Multiplex Congenita (AMC) | 19 | 32 | 51 | |
| Aspirin-like defect (ALD) | 1 | 1 | 2 | |
| Asthma | 3232 | 781 | 4013 | |
| Ataxia | 112 | 72 | 184 | |
| Atrial Fibrillation (AFIB) | 273 | 79 | 352 | |
| Atrophic Vaginitis | 7 | 1 | 8 | |
| Attention Deficit Hyperactivity Disorder (ADHD, ADD) | 1578 | 992 | 2570 | |
| Atypical Hemolytic Uremic Syndrome (aHUS) | 90 | 31 | 121 | |
| Auditory Processing Disorder (APD) | 22 | 22 | 44 | |
| Autism | 406 | 1497 | 1903 | |
| Autoimmune Disease | 241 | 34 | 275 | |
| Autoimmune Encephalitis (AE) | 11 | 9 | 20 | |
| Avascular Necrosis (AVN, Osteonecrosis) | 185 | 27 | 212 | |
| Barrett's Esophagus | 81 | 6 | 87 | |
| Barth Syndrome (BTHS) | 2 | 9 | 11 | |
| Bartonella | 14 | 3 | 17 | |
| Basal Cell Carcinoma (BCC) | 35 | 3 | 38 | |
| Batten Disease | 2 | 22 | 24 | |
| Beckwith-Wiedemann Syndrome (BWS) | 0 | 3 | 3 | |
| Behcet's Disease (BD) | 55 | 10 | 65 | |
| Bell's Palsy | 18 | 6 | 24 | |
| Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) | 39 | 10 | 49 | |
| Beta Thalassemia (Cooley's Anemia) | 42 | 9 | 51 | |
| Bile Acid Malabsorption (BAD) | 6 | 0 | 6 | |
| Bile Duct Cancer (Cholangiocarcinoma) | 10 | 7 | 17 | |
| Bipolar | 1674 | 355 | 2029 | |
| Bladder Cancer | 48 | 15 | 63 | |
| Blood Cancer | 17 | 4 | 21 | |
| Blood Clot | 122 | 19 | 141 | |
| Blood Clotting Disorder | 91 | 14 | 105 | |
| Blount's Disease | 1 | 1 | 2 | |
| Bone Cancer | 33 | 13 | 46 | |
| Borderline Personality Disorder (BPD) | 335 | 25 | 360 | |
| Brain Aneurysm | 55 | 12 | 67 | |
| Brain Cancer | 38 | 41 | 79 | |
| Brain Damage | 29 | 55 | 84 | |
| Brain Tumor | 94 | 62 | 156 | |
| BRCA Mutation | 22 | 0 | 22 | |
| Breast Cancer (BC) | 1023 | 94 | 1117 | |
| Breast Cancer in Men | 2 | 0 | 2 | |
| Breast Implant Illness | 1 | 0 | 1 | |
| Bronchiectasis | 66 | 8 | 74 | |
| Bronchitis | 114 | 13 | 127 | |
| Bronchopulmonary Dysplasia (BPD) | 0 | 7 | 7 | |
| Bulging Disc | 133 | 8 | 141 | |
| Bursitis | 92 | 4 | 96 | |
| Calcinosis | 6 | 1 | 7 | |
| Calciphylaxis | 2 | 2 | 4 | |
| Campomelic Dysplasia | 0 | 2 | 2 | |
| Cancer | 3559 | 1219 | 4778 | |
| Candidiasis (Yeast Infection) | 20 | 1 | 21 | |
| Capillary Lymphatic Venous Malformations (CLVMs) | 0 | 1 | 1 | |
| Carcinoid Cancer | 8 | 0 | 8 | |
| Carcinoma | 36 | 2 | 38 | |
| Cardiofaciocutaneous Syndrome (CFC syndrome) | 2 | 4 | 6 | |
| Carnitine Deficiency | 7 | 9 | 16 | |
| Caroli Disease | 1 | 6 | 7 | |
| Carpal Tunnel Syndrome (CTS) | 337 | 15 | 352 | |
| Castleman Disease (CD) | 5 | 2 | 7 | |
| Cauda Equina Syndrome | 3 | 1 | 4 | |
| Celiac Disease (CCD) | 505 | 143 | 648 | |
| Cellulitis | 11 | 5 | 16 | |
| Central Pain Syndrome (CPS) | 11 | 0 | 11 | |
| Cerebellar Atrophy | 1 | 2 | 3 | |
| Cerebral Amyloid Angiopathy | 1 | 1 | 2 | |
| Cerebral Cavernous Malformations (CCMs) | 1 | 1 | 2 | |
| Cerebral Palsy (CP) | 170 | 562 | 732 | |
| Cervical Cancer | 70 | 7 | 77 | |
| Cervical Dystonia | 39 | 3 | 42 | |
| Charge Syndrome | 3 | 8 | 11 | |
| Chiari Malformation (CM) | 278 | 102 | 380 | |
| Chilblains (Pernio) | 5 | 0 | 5 | |
| Chronic Fatigue Syndrome (CFS, ME) | 618 | 22 | 640 | |
| Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) | 142 | 14 | 156 | |
| Chronic Intestinal Pseudo-obstruction (CIPO) | 16 | 7 | 23 | |
| Chronic obstructive pulmonary disease (COPD) | 979 | 461 | 1440 | |
| Chronic Pain | 1684 | 186 | 1870 | |
| Chronic Venous Insufficiency (CVI) | 35 | 16 | 51 | |
| Cleft | 11 | 31 | 42 | |
| Clostridium difficile (C Diff) | 41 | 6 | 47 | |
| Clubfoot | 11 | 20 | 31 | |
| Cluster Headache | 207 | 35 | 242 | |
| Coffin-Lowry Syndrome (CLS) | 0 | 1 | 1 | |
| Cognitive Impairment (CI) | 44 | 37 | 81 | |
| Colon Cancer (CRC) | 85 | 24 | 109 | |
| Colon Polyps | 12 | 0 | 12 | |
| Colonic Inertia | 11 | 1 | 12 | |
| Colorectal Cancer (CRC) | 66 | 9 | 75 | |
| Complex Regional Pain Syndrome (CRPS, RSD) | 234 | 28 | 262 | |
| Congenital Adrenal Hyperplasia (CAH) | 8 | 12 | 20 | |
| Congenital Central Hypoventilation Syndrome (CCHS) | 1 | 5 | 6 | |
| Congenital Myopathy | 12 | 7 | 19 | |
| Congenital Sucrase-Isomaltase Deficiency (CSID) | 2 | 12 | 14 | |
| Constipation | 175 | 55 | 230 | |
| Conversion Disorder (CD) | 14 | 1 | 15 | |
| Coronavirus (COVID-19) | 180 | 24 | 204 | |
| Cortical Dysplasia | 1 | 5 | 6 | |
| Costochondritis | 54 | 1 | 55 | |
| Cowden Syndrome (CS) | 3 | 3 | 6 | |
| Craniocervical Instability (CCI) | 38 | 3 | 41 | |
| Craniosynostosis | 5 | 20 | 25 | |
| Crohn's Disease (CD) | 1524 | 261 | 1785 | |
| Cushing's Disease (CS) | 201 | 12 | 213 | |
| Cyclic Vomiting Syndrome (CVS) | 166 | 63 | 229 | |
| Cystic Fibrosis (CF) | 770 | 980 | 1750 | |
| Cystic Hygroma | 0 | 2 | 2 | |
| Cystinosis | 1 | 2 | 3 | |
| Cytomegalovirus (CMV) | 14 | 9 | 23 | |
| Dandy Walker Syndrome (DWS) | 4 | 17 | 21 | |
| Darier Disease (DD Keratosis Follicularis) | 3 | 1 | 4 | |
| Deep Vein Thrombosis (DVT) | 132 | 11 | 143 | |
| Degenerative Disc Disease (DDD) | 924 | 76 | 1000 | |
| Deletion Duplication Syndrome | 34 | 255 | 289 | |
| Delta-Storage Pool Deficiency | 4 | 4 | 8 | |
| Depression (MDD) | 5946 | 609 | 6555 | |
| Dercum's Disease (adiposis dolorosa) | 22 | 1 | 23 | |
| Dermatomyositis (DM) | 79 | 10 | 89 | |
| Desmoid Tumor | 25 | 3 | 28 | |
| Developmental Delay (DD) | 36 | 319 | 355 | |
| Diabetes (DM) | 4690 | 2100 | 6790 | |
| Disabled | 27 | 32 | 59 | |
| Disruptive Mood Dysregulation Disorder (DMDD) | 5 | 17 | 22 | |
| Dissociative Identity Disorder (DID, Multiple Personality Disorder) | 55 | 2 | 57 | |
| Diverticulitis | 161 | 13 | 174 | |
| Down Syndrome (DS) | 8 | 146 | 154 | |
| Dry Mouth | 17 | 1 | 18 | |
| Duodenitis | 5 | 1 | 6 | |
| Dupuytren's Contracture | 18 | 2 | 20 | |
| Dwarfism | 25 | 61 | 86 | |
| Dysarthria (Slurred Speech) | 7 | 5 | 12 | |
| Dysautonomia | 824 | 124 | 948 | |
| Dyskeratosis Congenita | 1 | 4 | 5 | |
| Dyslexia | 43 | 30 | 73 | |
| Dysmenorrhea (Painful Menstruation) | 28 | 2 | 30 | |
| Dysphagia (Difficulty Swallowing) | 65 | 39 | 104 | |
| Dystonia | 80 | 30 | 110 | |
| Ear Cancer | 1 | 0 | 1 | |
| Eating Disorder | 194 | 27 | 221 | |
| Eczema (Atopic Dermatitis) | 558 | 121 | 679 | |
| Edema | 69 | 13 | 82 | |
| Ehlers-Danlos Syndrome (EDS) | 1012 | 166 | 1178 | |
| Elephantiasis (Lymphatic Filariasis) | 4 | 2 | 6 | |
| Empty Sella Syndrome (ESS) | 17 | 0 | 17 | |
| Encephalitis | 14 | 12 | 26 | |
| Encephalocele | 0 | 3 | 3 | |
| Endometrial Cancer | 42 | 6 | 48 | |
| Endometriosis | 717 | 29 | 746 | |
| Enlarged Spleen (Splenomegaly) | 12 | 1 | 13 | |
| Eosinophilic Colitis (EC) | 17 | 5 | 22 | |
| Eosinophilic Esophagitis (EOE) | 252 | 269 | 521 | |
| Eosinophilic Gasteroenteritis (EG) | 40 | 18 | 58 | |
| Epicondylitis (Tennis Elbow) | 10 | 0 | 10 | |
| Epidermolysis Bullosa (EB) | 7 | 6 | 13 | |
| Epilepsy | 1149 | 2144 | 3293 | |
| Epithelial Basement Membrane Dystrophy | 4 | 0 | 4 | |
| Epstein Barr Syndrome (EBV) | 93 | 4 | 97 | |
| Erb's Palsy | 2 | 3 | 5 | |
| Erectile Dysfunction (ED) | 48 | 8 | 56 | |
| Erythema Nodosum | 8 | 0 | 8 | |
| Erythromelalgia | 21 | 1 | 22 | |
| Esophageal Atresia (EA) | 3 | 16 | 19 | |
| Esophageal Cancer | 12 | 7 | 19 | |
| Esophageal Varices | 3 | 2 | 5 | |
| Essential Thrombocythemia | 14 | 3 | 17 | |
| Essential Tremor | 90 | 22 | 112 | |
| Ewing's Sarcoma | 19 | 4 | 23 | |
| Exocrine Pancreatic Insufficiency (EPI) | 50 | 6 | 56 | |
| Eye Cancer | 7 | 5 | 12 | |
| Fabry disease | 228 | 41 | 269 | |
| Failure to Thrive (FTT) | 10 | 43 | 53 | |
| Familial Adenomatous Polyposis (FAP) | 50 | 7 | 57 | |
| Familial Hypercholesterolemia (FH) | 21 | 7 | 28 | |
| Familial Mediterranean Fever (FMF) | 7 | 5 | 12 | |
| Fatty Oxidation Disorder (FAOD) | 30 | 72 | 102 | |
| Fetal Alcohol Syndrome (FAS) | 2 | 26 | 28 | |
| Fibrocystic Breasts | 26 | 1 | 27 | |
| Fibrodysplasia Ossificans Progressiva (FOP) | 7 | 6 | 13 | |
| Fibromuscular Dysplasia (FMD) | 17 | 2 | 19 | |
| Fibromyalgia (FM) | 2947 | 185 | 3132 | |
| Fibrosing Mediastinitis | 5 | 0 | 5 | |
| Fibrous Dysplasia | 11 | 3 | 14 | |
| Fistula | 33 | 9 | 42 | |
| Foot Drop | 39 | 6 | 45 | |
| FOXG1 Syndrome | 0 | 18 | 18 | |
| Fragile X Syndrome (FXS) | 21 | 63 | 84 | |
| Friedreich's Ataxia (FA) | 23 | 19 | 42 | |
| Functional Neurological Disorder (FND) | 22 | 7 | 29 | |
| G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency) | 5 | 2 | 7 | |
| Galactosemia | 0 | 5 | 5 | |
| Gall Stones | 53 | 4 | 57 | |
| Ganglioneuroblastoma | 0 | 2 | 2 | |
| Gastric Bypass | 36 | 1 | 37 | |
| Gastric Dysmotility | 56 | 13 | 69 | |
| Gastritis | 175 | 17 | 192 | |
| Gastroesophageal Reflux Disease (GERD) | 1519 | 246 | 1765 | |
| Gastrointestinal Stromal Tumor (GIST) | 22 | 6 | 28 | |
| Gastroparesis (GP) | 615 | 98 | 713 | |
| Gastroschisis | 5 | 7 | 12 | |
| Gastrostomy Tube (G-tube) | 45 | 41 | 86 | |
| Gaucher Disease (GD) | 64 | 28 | 92 | |
| Gender Dysphoria | 35 | 2 | 37 | |
| Giant Cell Arteritis (GCA) | 7 | 1 | 8 | |
| Glucose Transporter Deficiency (GLUT1DS) | 1 | 2 | 3 | |
| Gluten Intolerance | 63 | 4 | 67 | |
| Glycogen Storage Disease (GSD) | 12 | 8 | 20 | |
| Goiter | 27 | 2 | 29 | |
| Goldenhar Syndrome | 2 | 4 | 6 | |
| Gout | 158 | 39 | 197 | |
| Graft Versus Host Disease (GVHD) | 43 | 12 | 55 | |
| Granular Cell Tumors | 1 | 0 | 1 | |
| Granuloma Annulare (GA) | 14 | 1 | 15 | |
| Grave's Disease (GD) | 250 | 21 | 271 | |
| Guillain-Barre Syndrome (GBS) | 64 | 5 | 69 | |
| Hansen's Disease (Leprosy) | 1 | 0 | 1 | |
| Hashimoto's Disease (HT) | 1056 | 60 | 1116 | |
| Head and Neck Cancer | 14 | 2 | 16 | |
| Headache | 226 | 17 | 243 | |
| Hearing Aid | 144 | 121 | 265 | |
| Hearing Loss | 379 | 214 | 593 | |
| Heart Disease | 1687 | 1023 | 2710 | |
| HELLP Syndrome | 3 | 0 | 3 | |
| Hemangioma | 9 | 6 | 15 | |
| Hemihyperplasia | 2 | 4 | 6 | |
| Hemochromatosis (Iron Overload) | 95 | 15 | 110 | |
| Hemophilia | 893 | 959 | 1852 | |
| Hemorrhoids | 53 | 3 | 56 | |
| Hepatitis | 356 | 82 | 438 | |
| Hereditary alpha-tryptasemia (H?T) | 9 | 1 | 10 | |
| Hereditary Angioedema (HAE) | 65 | 13 | 78 | |
| Hereditary hemorrhagic telangiectasia (HHT) | 15 | 4 | 19 | |
| Hereditary Spastic Paraparesis (HSP) | 55 | 9 | 64 | |
| Hereditary Spastic Paraplegia (HSP) | 32 | 14 | 46 | |
| Hernia | 215 | 30 | 245 | |
| Herpes (HSV) | 151 | 8 | 159 | |
| Hidradenitis Suppurativa (HS) | 338 | 11 | 349 | |
| High Blood Pressure (Hypertension, HBP) | 3743 | 770 | 4513 | |
| High Cholesterol (Hyperlipidemia) | 1551 | 248 | 1799 | |
| Hip Dysplasia | 42 | 34 | 76 | |
| Hip Replacement | 80 | 22 | 102 | |
| Hirschsprung's Disease (HD, HSCR) | 8 | 46 | 54 | |
| Hirsutism | 10 | 0 | 10 | |
| HIV | 862 | 98 | 960 | |
| Hodgkins Lymphoma | 59 | 6 | 65 | |
| Holoprosencephaly (HPE) | 0 | 9 | 9 | |
| Homocystinuria (HCU) | 0 | 6 | 6 | |
| Horner Syndrome | 5 | 3 | 8 | |
| Human Growth Hormone Deficiency (GHD) | 127 | 185 | 312 | |
| Human Papillomavirus (Human Papillomavirus (HPV) | 76 | 1 | 77 | |
| Huntington's Disease (HD) | 182 | 322 | 504 | |
| Hydrocephalus | 121 | 178 | 299 | |
| Hyper-IgA Syndrome | 0 | 1 | 1 | |
| Hyperaldosteronism | 6 | 0 | 6 | |
| Hyperemesis Gravidarum (HG, Morning Sickness) | 8 | 1 | 9 | |
| Hypereosinophilic Syndrome (HES) | 13 | 4 | 17 | |
| Hyperhidrosis | 61 | 1 | 62 | |
| Hyperkalemia | 17 | 3 | 20 | |
| Hypermobility Syndrome | 110 | 17 | 127 | |
| Hyperoxaluria | 2 | 1 | 3 | |
| Hyperparathyroidism | 100 | 10 | 110 | |
| Hypersomnia | 131 | 0 | 131 | |
| Hyperthyroidism | 164 | 11 | 175 | |
| Hypocalcemia | 12 | 2 | 14 | |
| Hypoglycemia (Low Blood Sugar) | 207 | 29 | 236 | |
| Hypohidrotic Ectodermal Dysplasia (HED) | 2 | 7 | 9 | |
| Hypokalemia | 55 | 3 | 58 | |
| Hypokalemic Periodic Paralysis | 30 | 10 | 40 | |
| Hyponatremia | 6 | 0 | 6 | |
| Hypoparathyroidism | 121 | 15 | 136 | |
| Hypophosphatasia (HPP) | 13 | 2 | 15 | |
| Hypoplasia of the Corpus Callosum | 3 | 3 | 6 | |
| Hypothyroidism | 2190 | 181 | 2371 | |
| Hypotonia | 18 | 115 | 133 | |
| Hypoxic Ischemic Encephalopathy (HIE) | 5 | 35 | 40 | |
| Hysterectomy | 76 | 3 | 79 | |
| Ichthyosis | 6 | 3 | 9 | |
| Immune Thrombocytopenic Purpura (ITP) | 124 | 18 | 142 | |
| Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) | 13 | 3 | 16 | |
| Incontinence | 177 | 48 | 225 | |
| Incontinentia Pigmenti (IP) | 3 | 25 | 28 | |
| Infertility | 71 | 2 | 73 | |
| Insomnia | 765 | 60 | 825 | |
| Intellectual Disability | 29 | 125 | 154 | |
| Intermittent Explosive Disorder (IED) | 7 | 6 | 13 | |
| Interstitial Cystitis (IC) | 266 | 12 | 278 | |
| Interstitial Lung Disease (ILD) | 100 | 21 | 121 | |
| Intracranial Hemorrhage (Brain Bleeds) | 6 | 3 | 9 | |
| Intracranial Hypertension (IH, Pseudotumor Cerebri) | 198 | 17 | 215 | |
| intracranial Pressure (ICP) | 2 | 1 | 3 | |
| Iritis | 18 | 1 | 19 | |
| Irritable Bowel Syndrome (IBS) | 1272 | 79 | 1351 | |
| Ischemic Colitis | 1 | 0 | 1 | |
| Jansen's Metaphyseal Chondrodysplasia | 1 | 1 | 2 | |
| Juvenile Arthritis (JA) | 113 | 165 | 278 | |
| Kabuki Syndrome | 0 | 5 | 5 | |
| Kaposi Sarcoma (KS) | 4 | 1 | 5 | |
| Kawasaki Disease | 2 | 4 | 6 | |
| Keratosis Pilaris (follicular keratosis) | 13 | 3 | 16 | |
| Kidney Disease | 1184 | 453 | 1637 | |
| Klinefelter Syndrome (XXY Syndrome) | 1 | 2 | 3 | |
| Klippel-Feil Syndrome (KFS) | 7 | 8 | 15 | |
| Klippel-Trenaunay Syndrome (KTS) | 6 | 3 | 9 | |
| Knee Replacement | 90 | 17 | 107 | |
| Lactose Intolerance | 66 | 11 | 77 | |
| Lamb-Shaffer Syndrome | 0 | 1 | 1 | |
| Lambert-Eaton myasthenic syndrome (LEMS) | 19 | 1 | 20 | |
| Landau Kleffner Syndrome (LKS) | 1 | 5 | 6 | |
| Langerhans Cell Histiocytosis (LCH) | 7 | 7 | 14 | |
| Larsen syndrome | 2 | 2 | 4 | |
| Laryngeal Cancer | 1 | 2 | 3 | |
| Laryngomalacia | 2 | 19 | 21 | |
| Laurence-Moon-Bardet-Biedl syndrome (LMBBS) | 1 | 1 | 2 | |
| Learning Disability | 41 | 68 | 109 | |
| Legg-Calve-Perthes Disease (LCPD) | 10 | 8 | 18 | |
| Leiomyosarcoma | 13 | 0 | 13 | |
| LEOPARD Syndrome | 3 | 1 | 4 | |
| Leukemia | 220 | 86 | 306 | |
| Leukocytosis | 11 | 0 | 11 | |
| Leukodystrophy | 16 | 25 | 41 | |
| Leukopenia | 6 | 1 | 7 | |
| Lichen Planus | 27 | 0 | 27 | |
| Lichen Sclerosis (LS) | 55 | 4 | 59 | |
| Lipedema | 38 | 3 | 41 | |
| Lipodystrophy | 6 | 1 | 7 | |
| Liposarcoma | 17 | 0 | 17 | |
| Lissencephaly | 0 | 21 | 21 | |
| Livedo Reticularis (LR) | 6 | 1 | 7 | |
| Liver Cancer | 36 | 20 | 56 | |
| Liver Disease (not hepatitis) | 511 | 131 | 642 | |
| Loeys Dietz Syndrome | 2 | 1 | 3 | |
| Loin Pain Hematuria Syndrome (LPHS) | 10 | 0 | 10 | |
| Loss of Mobility | 41 | 33 | 74 | |
| Low Blood Pressure (Hypotension) | 172 | 13 | 185 | |
| Low Testosterone | 39 | 3 | 42 | |
| Lung Cancer | 242 | 107 | 349 | |
| Lung Disease | 194 | 125 | 319 | |
| Lupus | 2552 | 229 | 2781 | |
| Lyme Disease | 236 | 27 | 263 | |
| Lymphedema | 191 | 24 | 215 | |
| Lymphocytic Colitis | 21 | 3 | 24 | |
| Lymphoma | 46 | 12 | 58 | |
| Lymphoproliferative Disease (LPD) | 5 | 6 | 11 | |
| Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC) | 11 | 2 | 13 | |
| Macular Degeneration | 130 | 38 | 168 | |
| Mal de debarquement Syndrome (MdDS) | 5 | 0 | 5 | |
| Malabsorption | 25 | 1 | 26 | |
| Malignant Hyperthermia (MH) | 6 | 0 | 6 | |
| Maple Syrup Urine Disease (MSUD) | 7 | 11 | 18 | |
| Marfan Syndrome (MFS) | 30 | 15 | 45 | |
| Mastocytosis (Mast Cell Activating Disease, MCAD) | 362 | 62 | 424 | |
| May Thurner Syndrome | 8 | 0 | 8 | |
| Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome | 3 | 0 | 3 | |
| McCune-Albright Syndrome (MAS) | 10 | 2 | 12 | |
| Median arcuate ligament syndrome (MALS) | 24 | 0 | 24 | |
| Memory Loss | 72 | 44 | 116 | |
| Meniere's Disease (MD) | 92 | 8 | 100 | |
| Menopause | 71 | 2 | 73 | |
| Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods) | 31 | 1 | 32 | |
| Mental Illness | 101 | 59 | 160 | |
| Mesothelioma | 2 | 3 | 5 | |
| Metabolic Syndrome | 35 | 13 | 48 | |
| Metatarsalgia | 2 | 0 | 2 | |
| Methicillin-Resistant Staphylococcus Aureus (MRSA) | 27 | 6 | 33 | |
| Microcephaly | 3 | 55 | 58 | |
| Microscopic Colitis | 13 | 0 | 13 | |
| Microtia | 5 | 33 | 38 | |
| Migraine | 2802 | 198 | 3000 | |
| Mitochondrial Disease | 91 | 93 | 184 | |
| Mixed Connective Tissue Disease (MCTD) | 224 | 9 | 233 | |
| Moebius Syndrome | 3 | 8 | 11 | |
| Monoclonal gammopathy of undetermined significance (MGUS) | 25 | 0 | 25 | |
| Mood Disorder | 80 | 39 | 119 | |
| Morgellons Disease (MD) | 6 | 2 | 8 | |
| Moyamoya Disease | 13 | 8 | 21 | |
| MTHFR | 92 | 12 | 104 | |
| Mucopolysaccharidoses (MPS) | 8 | 52 | 60 | |
| Multiple Endocrine Neoplasia (MEN) | 11 | 4 | 15 | |
| Multiple Myeloma (MM) | 161 | 35 | 196 | |
| Multiple Sclerosis (MS) | 5370 | 615 | 5985 | |
| Multiple System Atrophy (MSA) | 8 | 11 | 19 | |
| Muscle Spasms | 52 | 4 | 56 | |
| Muscle Tension Dysphonia (MTD) | 5 | 0 | 5 | |
| Muscular Dystrophy (MD) | 318 | 514 | 832 | |
| Myasthenia Gravis (MG) | 568 | 96 | 664 | |
| Mycobacterium Avium Complex (MAC) | 4 | 0 | 4 | |
| Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) | 17 | 5 | 22 | |
| Myelodysplastic syndrome (MDS) | 118 | 48 | 166 | |
| Myelofibrosis | 21 | 3 | 24 | |
| Myeloproliferative Neoplasms | 9 | 1 | 10 | |
| Myopathy | 37 | 16 | 53 | |
| Myositis | 43 | 8 | 51 | |
| Narcolepsy | 652 | 39 | 691 | |
| Nasal Polyps | 120 | 8 | 128 | |
| Neck Cancer | 5 | 0 | 5 | |
| Neck Surgery | 14 | 5 | 19 | |
| Neuralgia | 208 | 9 | 217 | |
| Neuroblastoma | 2 | 5 | 7 | |
| Neuroendocrine Cancer (NET) | 32 | 2 | 34 | |
| Neurofibromatosis (NF) | 70 | 29 | 99 | |
| Neurogenic Bladder | 137 | 38 | 175 | |
| Neurogenic Bowel | 8 | 4 | 12 | |
| Neuromyelitis optica (NMO) | 183 | 34 | 217 | |
| Neuropathy | 1162 | 152 | 1314 | |
| Neutropenia | 28 | 38 | 66 | |
| Niemann-Pick Disease | 6 | 8 | 14 | |
| Non-Hodgkin's Lymphoma (NHL) | 151 | 19 | 170 | |
| Non-radiographic Axial Spondyloarthritis (nrAxSpA) | 27 | 1 | 28 | |
| Nonspecific Interstitial Pneumonia (NSIP) | 3 | 0 | 3 | |
| Noonan Syndrome (NS) | 3 | 7 | 10 | |
| Obesity | 805 | 65 | 870 | |
| Obsessive Compulsive Disorder (OCD) | 485 | 122 | 607 | |
| Oppositional Defiant Disorder (ODD) | 39 | 121 | 160 | |
| Oral Cancer | 5 | 2 | 7 | |
| Organ Transplant | 279 | 93 | 372 | |
| Organic Acidemia (OA) | 6 | 51 | 57 | |
| Osteoarthritis (OA) | 2079 | 279 | 2358 | |
| Osteogenesis Imperfecta (OI) | 58 | 46 | 104 | |
| Osteomyelitis (OM) | 19 | 6 | 25 | |
| Osteopenia | 216 | 27 | 243 | |
| Osteoporosis | 541 | 76 | 617 | |
| Other, please specify | 796 | 280 | 1076 | |
| Ovarian Cancer | 185 | 15 | 200 | |
| Ovarian Cyst | 120 | 3 | 123 | |
| Overactive Bladder (OAB) | 126 | 12 | 138 | |
| Paget's | 6 | 0 | 6 | |
| Palmoplantar Pustulosis | 4 | 0 | 4 | |
| Pancreatic Cancer | 23 | 16 | 39 | |
| Pancreatitis | 122 | 24 | 146 | |
| Paraganglioma | 5 | 2 | 7 | |
| Paralysis | 143 | 143 | 286 | |
| Paraneoplastic Syndrome | 4 | 4 | 8 | |
| Parkinson's Disease (PD) | 489 | 418 | 907 | |
| Paroxysmal Nocturnal Hemoglobinuria (PNH) | 139 | 41 | 180 | |
| Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) | 14 | 23 | 37 | |
| Pelvic Congestion Syndrome (PCS) | 14 | 1 | 15 | |
| Pelvic Floor Dysfunction | 70 | 3 | 73 | |
| Pelvic Inflammatory Disease (PID) | 11 | 1 | 12 | |
| Pemphigus / Pemphigoid | 207 | 28 | 235 | |
| Pendred Syndrome | 0 | 1 | 1 | |
| Periodic Limb Movement Disorder (PLMD) | 17 | 2 | 19 | |
| Periodontitis (Gum Disease) | 20 | 0 | 20 | |
| Perivascular Epithelioid Cell Tumour (PEComas) | 1 | 0 | 1 | |
| Periventricular Leukomalacia (PVL) | 2 | 15 | 17 | |
| Persistent Genital Arousal Disorder | 2 | 0 | 2 | |
| Personality Disorder | 21 | 6 | 27 | |
| Pfeiffer Syndrome | 0 | 3 | 3 | |
| Phenylketonuria (PKU) | 29 | 36 | 65 | |
| Pheochromocytoma (PCC) | 18 | 2 | 20 | |
| Pierre Robin Sequence (PRS) | 3 | 20 | 23 | |
| Pituitary Tumor | 91 | 10 | 101 | |
| Plagiocephaly (Flat Head Syndrome) | 1 | 4 | 5 | |
| Plantar Fasciitis (PF) | 135 | 6 | 141 | |
| Pneumonia | 52 | 12 | 64 | |
| Poland Syndrome | 3 | 3 | 6 | |
| Polio | 7 | 8 | 15 | |
| Polychrondritis | 48 | 2 | 50 | |
| Polycystic Ovarian Syndrome (PCOS) | 926 | 43 | 969 | |
| Polycythemia Vera (PV) | 86 | 3 | 89 | |
| Polymicrogyria (PMG) | 0 | 22 | 22 | |
| Polymyalgia Rheumatica (PMR) | 24 | 2 | 26 | |
| Polymyositis (PM) | 45 | 2 | 47 | |
| Pompe Disease | 20 | 32 | 52 | |
| Popliteal Artery Entrapment Syndrome (PAES) | 0 | 1 | 1 | |
| Porphyria | 25 | 6 | 31 | |
| Post-Polio Syndrome (PPS) | 16 | 3 | 19 | |
| Posttraumatic Stress Disorder (PTSD) | 1921 | 237 | 2158 | |
| Precocious Puberty | 0 | 7 | 7 | |
| Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI) | 12 | 0 | 12 | |
| Premenstrual Dysphoric Disorder (PMDD) | 80 | 2 | 82 | |
| Primary Ciliary Dyskinesia (PCD) | 6 | 8 | 14 | |
| Primary Hyperoxaluria (PH) | 6 | 10 | 16 | |
| Primary Immunodeficiency (PID) | 357 | 109 | 466 | |
| Primary Peritoneal | 1 | 0 | 1 | |
| Progressive Multifocal Leukoencephalopathy (PML) | 2 | 2 | 4 | |
| Progressive Supranuclear Palsy (PSP) | 10 | 11 | 21 | |
| Prolactinoma | 6 | 0 | 6 | |
| Prostate Cancer | 91 | 46 | 137 | |
| Protein Deficiency | 11 | 2 | 13 | |
| Proteinuria (Protein in Urine) | 5 | 2 | 7 | |
| Prurigo Nodularis (PN) | 13 | 1 | 14 | |
| Pseudobulbar Affect (PBA) | 14 | 3 | 17 | |
| Psoriasis | 765 | 73 | 838 | |
| Psoriatic Arthritis (PsA) | 402 | 41 | 443 | |
| Ptosis (Drooping eye, Blepharoptosis) | 8 | 4 | 12 | |
| Pulmonary Arterial Hypertension (PAH) | 899 | 221 | 1120 | |
| Pulmonary Embolism (PE) | 103 | 13 | 116 | |
| Pulmonary Fibrosis (PF) | 131 | 37 | 168 | |
| Pyloric Stenosis (Gastric Outlet Obstruction) | 4 | 5 | 9 | |
| Pyoderma Gangrenosum (PG) | 19 | 0 | 19 | |
| Raynaud's Syndrome | 655 | 35 | 690 | |
| Rectal Cancer (CRC) | 24 | 4 | 28 | |
| Rectocele | 6 | 0 | 6 | |
| Renal Cell Carcinoma (Kidney Cancer, RCC) | 64 | 15 | 79 | |
| Respiratory Syncytial Virus (RSV) Infection | 0 | 2 | 2 | |
| Restless Leg Syndrome (RLS) | 392 | 29 | 421 | |
| Retroperitoneal Fibrosis | 2 | 2 | 4 | |
| Rheumatoid Arthritis (RA) | 1844 | 239 | 2083 | |
| Rickets (Osteomalacia) | 4 | 2 | 6 | |
| Rocky Mountain Spotted Fever (RMSF) | 6 | 1 | 7 | |
| Rosacea | 107 | 2 | 109 | |
| Rubella- German Measles | 2 | 0 | 2 | |
| Sacroiliac Joint Disease (SI) | 40 | 0 | 40 | |
| Sarcoidosis | 200 | 20 | 220 | |
| Sarcoma | 70 | 10 | 80 | |
| Schamberg's Disease | 3 | 0 | 3 | |
| Scheuermann's Kyphosis | 21 | 11 | 32 | |
| Schinzel-Giedion Syndrome (SGS) | 0 | 3 | 3 | |
| Schizencephaly | 1 | 25 | 26 | |
| Schizophrenia | 229 | 188 | 417 | |
| Sciatica | 232 | 17 | 249 | |
| Scleroderma | 291 | 37 | 328 | |
| Sclerosing Peritonitis (SP) | 1 | 0 | 1 | |
| Scoliosis | 545 | 143 | 688 | |
| Secondary Adrenal insufficiency | 89 | 17 | 106 | |
| Sensory Processing Disorder (SPD) | 75 | 213 | 288 | |
| Sepsis | 20 | 4 | 24 | |
| Sexually Transmitted Disease | 5 | 0 | 5 | |
| Shaken Baby Syndrome (SBS) | 2 | 12 | 14 | |
| Shingles (Herpes Zoster) | 72 | 9 | 81 | |
| Short Bowel Syndrome (SBS, Short Gut) | 76 | 34 | 110 | |
| Shoulder Replacement | 7 | 0 | 7 | |
| Sickle Cell Disease (SCD) | 934 | 416 | 1350 | |
| Sickle Cell Disease (SCD): Sickle Cell Trait | 56 | 18 | 74 | |
| Sinusitis | 197 | 24 | 221 | |
| Sjogren's Syndrome (SjS, SS) | 744 | 31 | 775 | |
| Skin Cancer | 44 | 12 | 56 | |
| Skin Cancer- Melanoma | 132 | 21 | 153 | |
| Sleep Apnea (OSA) | 1168 | 208 | 1376 | |
| Sleep Disorder | 145 | 40 | 185 | |
| Small for Gestational Age SGA) | 2 | 1 | 3 | |
| Small Intestinal Bacterial Overgrowth (SIBO) | 55 | 4 | 59 | |
| Smith-Lemli-Opitz Syndrome (SLOS) | 1 | 6 | 7 | |
| Sotos Syndrome | 1 | 5 | 6 | |
| Spasmodic Dysphonia | 10 | 0 | 10 | |
| Spastic Diplegia | 6 | 4 | 10 | |
| Spasticity | 29 | 19 | 48 | |
| Speech Impairment | 38 | 72 | 110 | |
| Spherocytosis | 11 | 8 | 19 | |
| Sphincter of Oddi Dysfunction | 7 | 1 | 8 | |
| Spina Bifida (SB) | 97 | 121 | 218 | |
| Spinal Cancer | 4 | 1 | 5 | |
| Spinal Cord | 775 | 168 | 943 | |
| Spinal Muscular Atrophy (SMA) | 207 | 393 | 600 | |
| Sprengel Deformity | 3 | 1 | 4 | |
| Squamous Cell Carcinoma (SCC) | 67 | 4 | 71 | |
| Stickler Syndrome | 11 | 13 | 24 | |
| Stiff Person Syndrome (SPS) | 18 | 2 | 20 | |
| Stomach Cancer | 20 | 11 | 31 | |
| Stomach Ulcer | 106 | 12 | 118 | |
| Stroke | 340 | 356 | 696 | |
| Subcortical Band Heterotopia | 0 | 4 | 4 | |
| Subglottic Stenosis (SGS) | 9 | 7 | 16 | |
| Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome) | 14 | 1 | 15 | |
| Syncope | 92 | 6 | 98 | |
| Synesthesia | 3 | 1 | 4 | |
| Syringomyelia | 78 | 13 | 91 | |
| Tardive Dyskinesia (TD) | 52 | 5 | 57 | |
| Tarlov Cysts | 21 | 0 | 21 | |
| Tay Sachs (TSD) | 10 | 18 | 28 | |
| Temporomandibular joint (TMJ) | 220 | 8 | 228 | |
| Tendonitis | 93 | 3 | 96 | |
| Testicular Cancer | 8 | 1 | 9 | |
| Thalassemia | 50 | 6 | 56 | |
| Thoracic Outlet Syndrome (TOS) | 45 | 2 | 47 | |
| Throat Cancer | 10 | 2 | 12 | |
| Thrombocytopenia (TCP) | 35 | 7 | 42 | |
| Thrombotic Thrombocytopenic Purpura (TTP) | 6 | 1 | 7 | |
| Thyroid Cancer | 277 | 11 | 288 | |
| Thyroid Eye Disease (TED) | 66 | 2 | 68 | |
| Thyroid Nodule | 108 | 2 | 110 | |
| Thyroidectomy | 57 | 3 | 60 | |
| Tics | 8 | 4 | 12 | |
| Tongue Cancer | 1 | 1 | 2 | |
| Tooth Agenesis (Anodontia) | 3 | 0 | 3 | |
| Torticollis (Wry Neck) | 3 | 3 | 6 | |
| Tourette Syndrome (TS) | 54 | 59 | 113 | |
| Townes-Brocks Syndrome | 0 | 1 | 1 | |
| Toxic Synovitis | 2 | 0 | 2 | |
| Tracheobronchomalacia (TBM) | 3 | 1 | 4 | |
| Tracheomalacia | 3 | 11 | 14 | |
| Transient Global Amnesia (TGA) | 4 | 7 | 11 | |
| Traumatic Brain Injury (TBI) | 216 | 136 | 352 | |
| Treacher Collins syndrome (TCS) | 2 | 4 | 6 | |
| Trichotillomania (TTM) | 31 | 2 | 33 | |
| Trigger Finger (Stenosing Tenosynovitis) | 9 | 2 | 11 | |
| Trisomy 13 (Patau Syndrome) | 1 | 3 | 4 | |
| Trisomy 18 (Edwards Syndrome) | 0 | 5 | 5 | |
| Trisomy X (XXX) | 9 | 11 | 20 | |
| Tuberculosis | 12 | 4 | 16 | |
| Ulcerative Colitis (UC) | 789 | 113 | 902 | |
| Undifferentiated Connective Tissue Disease (UCTD) | 63 | 5 | 68 | |
| Urea Cycle Disorder (UCD) | 25 | 12 | 37 | |
| Urethral Prolapse | 1 | 0 | 1 | |
| Urinary Tract Infection (UTI) | 71 | 10 | 81 | |
| Urticaria (Hives) | 189 | 21 | 210 | |
| Usher Syndrome | 6 | 6 | 12 | |
| Uterine Cancer | 28 | 7 | 35 | |
| Uterine Fibroids | 147 | 1 | 148 | |
| Uterine Leiomyosarcoma | 6 | 1 | 7 | |
| Uterine Polyps | 7 | 0 | 7 | |
| Uveitis | 52 | 14 | 66 | |
| VACTERL Syndrome | 0 | 6 | 6 | |
| Vaginismus | 11 | 1 | 12 | |
| Valosin Containing Protein (VCP) | 8 | 1 | 9 | |
| Varicose Veins | 43 | 1 | 44 | |
| Vasculitis | 74 | 13 | 87 | |
| Velopharyngeal Insufficiency (VPI) | 1 | 1 | 2 | |
| Vertebral Artery Dissection (VAD) | 11 | 1 | 12 | |
| Vertigo | 171 | 28 | 199 | |
| Vision Impairment | 867 | 404 | 1271 | |
| Vitamin B12 Deficiency | 98 | 4 | 102 | |
| Vitamin D Deficiency | 229 | 14 | 243 | |
| Vitiligo | 79 | 11 | 90 | |
| Vocal Cord Dysfunction (VCD) | 34 | 11 | 45 | |
| Von Hippel-Lindau Syndrome | 3 | 2 | 5 | |
| Von Willebrand Disease (VWD) | 293 | 158 | 451 | |
| Vulvar Cancer | 9 | 1 | 10 | |
| Vulvodynia | 8 | 0 | 8 | |
| Waldenstrom's Macroglobulinemia (WM, Lymphoplasmacytic Lymphoma) | 165 | 20 | 185 | |
| Wegener's Granulomatosis with Polyangiitis (GPA) | 26 | 5 | 31 | |
| Wheelchair | 1701 | 1569 | 3270 | |
| Williams Syndrome (WS) | 8 | 32 | 40 | |
| Wilson's Disease (hepatolenticular degeneration) | 11 | 20 | 31 | |
| Wolf-Hirschhorn Syndrome (WHS) | 0 | 3 | 3 | |
| Wolff-Parkinson-White (WPW) Syndrome | 30 | 12 | 42 | |
| X-Linked Hypophosphatemia (XLH) | 15 | 6 | 21 | |
| Zoon vulvitis | 1 | 0 | 1 |
Canada
UK
Germany
France
Italy
Spain
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.
