Here are our current U.S. patient and caregiver counts. We typically obtain 50% response for non-cancers, and up to 20% for cancers.
| Disease/Condition - Non-Cancer | Caregiver | Patient | Total | |
| ABCD Syndrome | 2 | 2 | 4 | |
| Achalasia | 5 | 28 | 33 | |
| Acne | 11 | 129 | 140 | |
| Acoustic Neuroma (Vestibula Schwannoma) | 4 | 13 | 17 | |
| Acromegaly | 5 | 25 | 30 | |
| Addiction | 63 | 340 | 403 | |
| Addison's Disease (Adrenal insufficiency) | 55 | 204 | 259 | |
| Adenomyosis | 1 | 37 | 38 | |
| Adhesive Capulitis (Frozen Shoulder) | 5 | 18 | 23 | |
| Agenesis of the Corpus Callosum (ACC) | 27 | 5 | 32 | |
| Aicardi Syndrome | 8 | 1 | 9 | |
| Albinism | 19 | 16 | 35 | |
| Allergies | 404 | 1165 | 1569 | |
| Alopecia | 20 | 86 | 106 | |
| Alpha 1 Antitrypsin Deficiency (A1AD) | 17 | 82 | 99 | |
| Alzheimer's Disease (AD) | 1185 | 94 | 1279 | |
| Amputation | 54 | 52 | 106 | |
| Amyloidosis | 4 | 19 | 23 | |
| Amyotrophic Lateral Sclerosis (ALS) | 106 | 81 | 187 | |
| Anemia | 79 | 898 | 977 | |
| Aneurysm | 11 | 38 | 49 | |
| Ankylosing Spondylitis (AS) | 35 | 400 | 435 | |
| Anoxic Brain Injury | 9 | 4 | 13 | |
| Antiphospholipid Syndrome (APS) | 7 | 104 | 111 | |
| Anxiety | 671 | 4744 | 5415 | |
| Aphasia | 9 | 11 | 20 | |
| Aplastic Anemia (AA) | 68 | 107 | 175 | |
| Apraxia | 56 | 5 | 61 | |
| Arachnoid Cyst | 6 | 11 | 17 | |
| Arachnoiditis | 3 | 24 | 27 | |
| Arteriovenous Malformation (AVM) | 8 | 22 | 30 | |
| Arthrogryposis Multiplex Congenita (AMC) | 33 | 18 | 51 | |
| Asthma | 771 | 2971 | 3742 | |
| Ataxia | 69 | 101 | 170 | |
| Atrial Fibrillation (AFIB) | 72 | 248 | 320 | |
| Attention Deficit Hyperactivity Disorder (ADHD, ADD) | 975 | 1266 | 2241 | |
| Atypical Hemolytic Uremic Syndrome (aHUS) | 28 | 79 | 107 | |
| Auditory Processing Disorder (APD) | 20 | 15 | 35 | |
| Autism | 1484 | 341 | 1825 | |
| Autoimmune Disease | 30 | 214 | 244 | |
| Autoimmune Encephalitis (AE) | 8 | 11 | 19 | |
| Avascular Necrosis (AVN, Osteonecrosis) | 26 | 166 | 192 | |
| Barrett's Esophagus | 5 | 76 | 81 | |
| Barth Syndrome (BTHS) | 9 | 3 | 12 | |
| Batten Disease | 22 | 2 | 24 | |
| Behcet's Disease (BD) | 9 | 51 | 60 | |
| Bell's Palsy | 6 | 15 | 21 | |
| Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) | 10 | 35 | 45 | |
| Beta Thalassemia (Cooley's Anemia) | 3 | 35 | 38 | |
| Bipolar | 345 | 1467 | 1812 | |
| Blood Clot | 17 | 104 | 121 | |
| Blood Clotting Disorder | 11 | 80 | 91 | |
| Borderline Personality Disorder (BPD) | 25 | 286 | 311 | |
| Brain Aneurysm | 12 | 55 | 67 | |
| Brain Damage | 51 | 23 | 74 | |
| Brain Tumor | 58 | 83 | 141 | |
| BRCA Mutation | 0 | 16 | 16 | |
| Bronchiectasis | 7 | 63 | 70 | |
| Bronchitis | 13 | 101 | 114 | |
| Bulging Disc | 9 | 112 | 121 | |
| Bursitis | 4 | 85 | 89 | |
| Campomelic Dysplasia | 1 | 0 | 1 | |
| Caroli Disease | 6 | 1 | 7 | |
| Carpal Tunnel Syndrome (CTS) | 14 | 291 | 305 | |
| Castleman Disease (CD) | 2 | 5 | 7 | |
| Celiac Disease (CCD) | 147 | 463 | 610 | |
| Cerebral Palsy (CP) | 568 | 164 | 732 | |
| Cervical Dystonia | 3 | 32 | 35 | |
| Charge Syndrome | 8 | 3 | 11 | |
| Chiari Malformation (CM) | 102 | 268 | 370 | |
| Chronic Fatigue Syndrome (CFS, ME) | 21 | 516 | 537 | |
| Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) | 13 | 129 | 142 | |
| Chronic Intestinal Pseudo-obstruction (CIPO) | 7 | 14 | 21 | |
| Chronic obstructive pulmonary disease (COPD) | 442 | 896 | 1338 | |
| Chronic Pain, Back Pain | 183 | 1520 | 1703 | |
| Chronic Venous Insufficiency (CVI) | 16 | 27 | 43 | |
| Cleft | 33 | 11 | 44 | |
| Clostridium difficile (C Diff) | 6 | 40 | 46 | |
| Clubfoot | 20 | 9 | 29 | |
| Cluster Headache | 36 | 196 | 232 | |
| Cognitive Impairment (CI) | 36 | 40 | 76 | |
| Complex Regional Pain Syndrome (CRPS, RSD) | 28 | 207 | 235 | |
| Congenital Adrenal Hyperplasia (CAH) | 12 | 5 | 17 | |
| Congenital Central Hypoventilation Syndrome (CCHS) | 5 | 1 | 6 | |
| Congenital Myopathy | 6 | 10 | 16 | |
| Congenital Sucrase-Isomaltase Deficiency (CSID) | 13 | 2 | 15 | |
| Constipation | 53 | 152 | 205 | |
| Conversion Disorder (CD) | 1 | 10 | 11 | |
| Coronavirus (COVID-19) | 14 | 70 | 84 | |
| Costochondritis | 1 | 47 | 48 | |
| Craniocervical Instability (CCI) | 3 | 29 | 32 | |
| Craniosynostosis | 20 | 4 | 24 | |
| Crohn's Disease (CD) | 272 | 1521 | 1793 | |
| Cushing's Disease (CS) | 12 | 201 | 213 | |
| Cyclic Vomiting Syndrome (CVS) | 62 | 150 | 212 | |
| Cystic Fibrosis (CF) | 990 | 777 | 1767 | |
| Cytomegalovirus (CMV) | 10 | 14 | 24 | |
| Dandy Walker Syndrome (DWS) | 16 | 4 | 20 | |
| Deep Vein Thrombosis (DVT) | 10 | 118 | 128 | |
| Degenerative Disc Disease (DDD) | 73 | 850 | 923 | |
| Deletion Duplication Syndrome | 250 | 34 | 284 | |
| Delta-Storage Pool Deficiency | 4 | 4 | 8 | |
| Depression (MDD) | 593 | 5108 | 5701 | |
| Dercum's Disease (adiposis dolorosa) | 1 | 20 | 21 | |
| Dermatomyositis (DM) | 10 | 74 | 84 | |
| Desmoid Tumor | 2 | 26 | 28 | |
| Developmental Delay (DD) | 306 | 33 | 339 | |
| Diabetes (DM) | 2044 | 4346 | 6390 | |
| Diabetes (DM) Type 1 | 657 | 960 | 1617 | |
| Diabetes (DM) Type 2 | 439 | 1886 | 2325 | |
| Disruptive Mood Dysregulation Disorder (DMDD) | 17 | 4 | 21 | |
| Dissociative Identity Disorder (DID, Multiple Personality Disorder) | 3 | 44 | 47 | |
| Diverticulitis | 13 | 146 | 159 | |
| Down Syndrome (DS) | 146 | 9 | 155 | |
| Dravet Syndrome | 63 | 3 | 66 | |
| Duchenne Muscular Dystrophy | 232 | 30 | 262 | |
| Dupuytren's Contracture | 2 | 18 | 20 | |
| Dwarfism | 57 | 26 | 83 | |
| Dysautonomia | 119 | 729 | 848 | |
| Dyslexia | 29 | 36 | 65 | |
| Dysphagia (Difficulty Swallowing) | 39 | 58 | 97 | |
| Dystonia | 31 | 80 | 111 | |
| Eating Disorder | 24 | 125 | 149 | |
| Eczema (Atopic Dermatitis) | 122 | 488 | 610 | |
| Edema | 13 | 56 | 69 | |
| Ehlers-Danlos Syndrome (EDS) | 159 | 925 | 1084 | |
| Empty Sella Syndrome (ESS) | 0 | 14 | 14 | |
| Encephalitis | 12 | 14 | 26 | |
| Encephalocele | 3 | 0 | 3 | |
| Endometriosis | 26 | 616 | 642 | |
| Eosinophilic Colitis (EC) | 5 | 16 | 21 | |
| Eosinophilic Esophagitis (EOE) | 271 | 242 | 513 | |
| Eosinophilic Gasteroenteritis (EG) | 18 | 38 | 56 | |
| Epidermolysis Bullosa (EB) | 6 | 7 | 13 | |
| Epilepsy | 2177 | 1122 | 3299 | |
| Epstein Barr Syndrome (EBV) | 5 | 77 | 82 | |
| Erb's Palsy | 3 | 0 | 3 | |
| Erectile Dysfunction (ED) | 7 | 39 | 46 | |
| Erythromelalgia | 0 | 18 | 18 | |
| Esophageal Atresia (EA) | 17 | 3 | 20 | |
| Essential Thrombocythemia | 2 | 12 | 14 | |
| Essential Tremor | 19 | 78 | 97 | |
| Exocrine Pancreatic Insufficiency (EPI) | 5 | 37 | 42 | |
| Fabry disease | 39 | 216 | 255 | |
| Failure to Thrive (FTT) | 40 | 9 | 49 | |
| Familial Adenomatous Polyposis (FAP) | 7 | 50 | 57 | |
| Familial Hypercholesterolemia (FH) | 5 | 16 | 21 | |
| Familial Mediterranean Fever (FMF) | 5 | 6 | 11 | |
| Fatty Oxidation Disorder (FAOD) | 73 | 28 | 101 | |
| Fetal Alcohol Syndrome (FAS) | 24 | 1 | 25 | |
| Fibrodysplasia Ossificans Progressiva (FOP) | 6 | 6 | 12 | |
| Fibromuscular Dysplasia (FMD) | 2 | 17 | 19 | |
| Fibromyalgia (FM) | 177 | 2688 | 2865 | |
| Fibrous Dysplasia | 3 | 11 | 14 | |
| Fistula | 9 | 30 | 39 | |
| FOXG1 Syndrome | 19 | 0 | 19 | |
| Fragile X Syndrome (FXS) | 62 | 21 | 83 | |
| Friedreich's Ataxia (FA) | 15 | 21 | 36 | |
| Galactosemia | 5 | 0 | 5 | |
| Gall Stones | 4 | 50 | 54 | |
| Ganglioneuroblastoma | 2 | 0 | 2 | |
| Gardner's Syndrome | 0 | 0 | 0 | |
| Gastric Dysmotility | 10 | 51 | 61 | |
| Gastritis | 16 | 159 | 175 | |
| Gastroesophageal Reflux Disease (GERD) | 249 | 1380 | 1629 | |
| Gastroparesis (GP) | 98 | 563 | 661 | |
| Gastroschisis | 6 | 5 | 11 | |
| Gastrostomy Tube (G-tube) | 30 | 40 | 70 | |
| Gaucher Disease (GD) | 21 | 54 | 75 | |
| Giant Cell Arteritis (GCA) | 0 | 7 | 7 | |
| Gluten Intolerance | 3 | 55 | 58 | |
| Glycogen Storage Disease (GSD) | 7 | 11 | 18 | |
| Gout | 36 | 140 | 176 | |
| Graft Versus Host Disease (GVHD) | 9 | 31 | 40 | |
| Granular Cell Tumors | 0 | 1 | 1 | |
| Grave's Disease (GD) | 19 | 231 | 250 | |
| Guillain-Barre Syndrome (GBS) | 4 | 60 | 64 | |
| Hansen's Disease (Leprosy) | 0 | 1 | 1 | |
| Hashimoto's Disease (HT) | 55 | 934 | 989 | |
| Headache | 16 | 168 | 184 | |
| Hearing Loss | 214 | 337 | 551 | |
| Heart Disease | 998 | 1561 | 2559 | |
| Hemangioma | 6 | 9 | 15 | |
| Hemochromatosis (Iron Overload) | 15 | 83 | 98 | |
| Hemophilia | 965 | 897 | 1862 | |
| Hemophilia A | 470 | 432 | 902 | |
| Hemophilia B | 177 | 165 | 342 | |
| Hemorrhoids | 4 | 44 | 48 | |
| Hepatitis | 80 | 320 | 400 | |
| Hereditary Angioedema (HAE) | 12 | 60 | 72 | |
| Hereditary hemorrhagic telangiectasia (HHT) | 4 | 15 | 19 | |
| Hereditary Spastic Paraparesis (HSP) | 9 | 56 | 65 | |
| Hereditary Spastic Paraplegia (HSP) | 13 | 30 | 43 | |
| Hernia | 31 | 176 | 207 | |
| Herpes (HSV) | 8 | 126 | 134 | |
| Hidradenitis Suppurativa (HS) | 9 | 314 | 323 | |
| High Blood Pressure (Hypertension, HBP) | 720 | 3367 | 4087 | |
| High Cholesterol (Hyperlipidemia) | 221 | 1359 | 1580 | |
| Hip Dysplasia | 28 | 43 | 71 | |
| Hip Replacement | 22 | 73 | 95 | |
| Hirschsprung's Disease (HD, HSCR) | 47 | 7 | 54 | |
| HIV | 91 | 756 | 847 | |
| Holoprosencephaly (HPE) | 9 | 0 | 9 | |
| Horner Syndrome | 3 | 5 | 8 | |
| Human Growth Hormone Deficiency (GHD) | 191 | 122 | 313 | |
| Human Papillomavirus (Human Papillomavirus (HPV) | 1 | 60 | 61 | |
| Huntington's Disease (HD) | 330 | 183 | 513 | |
| Hydrocephalus | 177 | 116 | 293 | |
| Hyperemesis Gravidarum (HG, Morning Sickness) | 1 | 9 | 10 | |
| Hypereosinophilic Syndrome (HES) | 4 | 11 | 15 | |
| Hyperhidrosis | 2 | 49 | 51 | |
| Hyperkalemia | 3 | 16 | 19 | |
| Hypermobility Syndrome | 14 | 78 | 92 | |
| Hyperoxaluria | 1 | 1 | 2 | |
| Hyperparathyroidism | 10 | 88 | 98 | |
| Hypersomnia | 0 | 120 | 120 | |
| Hyperthyroidism | 11 | 143 | 154 | |
| Hypoglycemia (Low Blood Sugar) | 28 | 181 | 209 | |
| Hypokalemia | 2 | 49 | 51 | |
| Hypokalemic Periodic Paralysis | 9 | 30 | 39 | |
| Hypoparathyroidism | 14 | 100 | 114 | |
| Hypophosphatasia (HPP) | 2 | 12 | 14 | |
| Hypoplasia of the Corpus Callosum | 2 | 2 | 4 | |
| Hypothyroidism | 178 | 1987 | 2165 | |
| Hypotonia | 107 | 15 | 122 | |
| Hypoxic Ischemic Encephalopathy (HIE) | 35 | 5 | 40 | |
| Ichthyosis | 3 | 4 | 7 | |
| Immune Thrombocytopenic Purpura (ITP) | 18 | 117 | 135 | |
| Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) | 3 | 10 | 13 | |
| Incontinence | 52 | 156 | 208 | |
| Incontinentia Pigmenti (IP) | 25 | 3 | 28 | |
| Infertility | 3 | 55 | 58 | |
| Insomnia | 56 | 663 | 719 | |
| Intellectual Disability | 125 | 26 | 151 | |
| Intellectually Disabled | 11 | 2 | 13 | |
| Intermittent Explosive Disorder (IED) | 6 | 6 | 12 | |
| Interstitial Cystitis (IC) | 12 | 234 | 246 | |
| Interstitial Lung Disease (ILD) | 21 | 95 | 116 | |
| Intracranial Hypertension (IH, Pseudotumor Cerebri) | 16 | 189 | 205 | |
| Iritis | 1 | 16 | 17 | |
| Irritable Bowel Syndrome (IBS) | 77 | 1101 | 1178 | |
| Juvenile Arthritis (JA) | 165 | 96 | 261 | |
| Kaposi Sarcoma (KS) | 1 | 2 | 3 | |
| Kawasaki Disease | 4 | 2 | 6 | |
| Kidney Disease | 432 | 1058 | 1490 | |
| Klippel-Feil Syndrome (KFS) | 8 | 6 | 14 | |
| Klippel-Trenaunay Syndrome (KTS) | 2 | 5 | 7 | |
| Knee Replacement | 16 | 81 | 97 | |
| Lactose Intolerance | 10 | 54 | 64 | |
| Lambert-Eaton myasthenic syndrome (LEMS) | 2 | 19 | 21 | |
| Landau Kleffner Syndrome (LKS) | 6 | 1 | 7 | |
| Langerhans Cell Histiocytosis (LCH) | 8 | 7 | 15 | |
| Laryngomalacia | 19 | 2 | 21 | |
| Learning Disability | 61 | 34 | 95 | |
| Leiomyosarcoma | 0 | 8 | 8 | |
| Legg-Calve-Perthes Disease (LCPD) | 8 | 9 | 17 | |
| Lennox Gastaut Syndrome (LGS) | 332 | 13 | 345 | |
| LEOPARD Syndrome | 1 | 3 | 4 | |
| Leukodsytrophy | 24 | 14 | 38 | |
| Lichen Planus | 0 | 22 | 22 | |
| Lichen Sclerosis (LS) | 4 | 46 | 50 | |
| Lipedema | 3 | 34 | 37 | |
| Liposarcoma | 0 | 10 | 10 | |
| Lissencephaly | 24 | 0 | 24 | |
| Liver Disease (not hepatitis) | 124 | 447 | 571 | |
| Loin Pain Hematuria Syndrome (LPHS) | 0 | 10 | 10 | |
| Loss of Mobility | 24 | 27 | 51 | |
| Low Blood Pressure (Hypotension) | 13 | 152 | 165 | |
| Low Testosterone | 2 | 34 | 36 | |
| Lung Disease | 120 | 182 | 302 | |
| Lupus | 218 | 2324 | 2542 | |
| Lyme Disease | 26 | 188 | 214 | |
| Lymphedema | 21 | 175 | 196 | |
| Lymphocytic Colitis | 4 | 19 | 23 | |
| Lymphoproliferative Disease (LPD) | 5 | 5 | 10 | |
| Macular Degeneration | 41 | 125 | 166 | |
| Maple Syrup Urine Disease (MSUD) | 11 | 7 | 18 | |
| Marfan Syndrome (MFS) | 15 | 30 | 45 | |
| Mastocytosis (Mast Cell Activating Disease, MCAD) | 60 | 325 | 385 | |
| McCune-Albright Syndrome (MAS) | 2 | 10 | 12 | |
| Memory Loss | 33 | 54 | 87 | |
| Meniere's Disease (MD) | 9 | 88 | 97 | |
| Mental Illness | 56 | 82 | 138 | |
| Metabolic Syndrome | 14 | 30 | 44 | |
| Methicillin-Resistant Staphylococcus Aureus (MRSA) | 4 | 24 | 28 | |
| Microcephaly | 54 | 1 | 55 | |
| Microtia | 37 | 6 | 43 | |
| Migraine | 187 | 2483 | 2670 | |
| Mitochondrial Disease | 91 | 84 | 175 | |
| Mixed Connective Tissue Disease (MCTD) | 9 | 206 | 215 | |
| Moebius Syndrome | 7 | 3 | 10 | |
| Monoclonal gammopathy of undetermined significance (MGUS) | 0 | 23 | 23 | |
| Mood Disorder | 38 | 69 | 107 | |
| Morgellons Disease (MD) | 2 | 5 | 7 | |
| Moyamoya Disease | 8 | 12 | 20 | |
| MTHFR | 13 | 86 | 99 | |
| Mucopolysaccharidoses (MPS) | 49 | 7 | 56 | |
| Multiple Endocrine Neoplasia (MEN) | 4 | 11 | 15 | |
| Multiple Sclerosis (MS) | 631 | 4937 | 5568 | |
| Multiple System Atrophy (MSA) | 12 | 8 | 20 | |
| Muscular Dystrophy (MD) | 457 | 271 | 728 | |
| Myasthenia Gravis (MG) | 93 | 558 | 651 | |
| Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) | 5 | 14 | 19 | |
| Myelodysplastic syndrome (MDS) | 38 | 93 | 131 | |
| Myelofibrosis | 3 | 20 | 23 | |
| Myopathy | 14 | 30 | 44 | |
| Myositis | 8 | 40 | 48 | |
| Narcolepsy | 38 | 604 | 642 | |
| Nasal Polyps | 7 | 119 | 126 | |
| NASH | 10 | 58 | 68 | |
| Neck Surgery | 4 | 11 | 15 | |
| Neuralgia | 9 | 194 | 203 | |
| Neuroblastoma | 5 | 2 | 7 | |
| Neurofibromatosis (NF) | 29 | 66 | 95 | |
| Neurogenic Bladder | 36 | 120 | 156 | |
| Neuromyelitis optica (NMO) | 34 | 181 | 215 | |
| Neuropathy | 144 | 1052 | 1196 | |
| Neutropenia | 38 | 28 | 66 | |
| Niemann-Pick Disease | 7 | 6 | 13 | |
| Non-radiographic Axial Spondyloarthritis (nrAxSpA) | 1 | 17 | 18 | |
| Noonan Syndrome (NS) | 7 | 3 | 10 | |
| Obesity | 57 | 670 | 727 | |
| Obsessive Compulsive Disorder (OCD) | 114 | 390 | 504 | |
| Oppositional Defiant Disorder (ODD) | 121 | 38 | 159 | |
| Organ Transplant | 91 | 243 | 334 | |
| Organic Acidemia (OA) | 51 | 5 | 56 | |
| Osteoarthritis (OA) | 277 | 1945 | 2222 | |
| Osteogenesis Imperfecta (OI) | 45 | 57 | 102 | |
| Osteomyelitis (OM) | 6 | 13 | 19 | |
| Osteopenia | 24 | 203 | 227 | |
| Osteoporosis | 76 | 506 | 582 | |
| Ovarian Cyst | 1 | 91 | 92 | |
| Overactive Bladder (OAB) | 11 | 109 | 120 | |
| Pancreatitis | 21 | 117 | 138 | |
| Paralysis | 139 | 123 | 262 | |
| Paraneoplastic Syndrome | 4 | 4 | 8 | |
| Parkinson's Disease (PD) | 395 | 450 | 845 | |
| Paroxysmal Nocturnal Hemoglobinuria (PNH) | 41 | 143 | 184 | |
| Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep | 23 | 13 | 36 | |
| Pelvic Floor Dysfunction | 2 | 59 | 61 | |
| Pemphigus | 27 | 213 | 240 | |
| Periventricular Leukomalacia (PVL) | 15 | 1 | 16 | |
| Personality Disorder | 4 | 12 | 16 | |
| Pfeiffer Syndrome | 3 | 0 | 3 | |
| Phenylketonuria (PKU) | 33 | 28 | 61 | |
| Pheochromocytoma (PCC) | 2 | 17 | 19 | |
| Pierre Robin Sequence (PRS) | 19 | 2 | 21 | |
| Pituitary Tumor | 10 | 80 | 90 | |
| Plantar Fasciitis (PF) | 5 | 127 | 132 | |
| Pneumonia | 8 | 38 | 46 | |
| Poland Syndrome | 3 | 3 | 6 | |
| Polio | 8 | 6 | 14 | |
| Polychrondritis | 1 | 48 | 49 | |
| Polycystic Ovarian Syndrome (PCOS) | 43 | 788 | 831 | |
| Polycythemia Vera (PV) | 2 | 83 | 85 | |
| Polymicrogyria (PMG) | 19 | 0 | 19 | |
| Polymyalgia Rheumatica (PMR) | 2 | 21 | 23 | |
| Polymyositis (PM) | 2 | 40 | 42 | |
| Pompe Disease | 32 | 19 | 51 | |
| Porphyria | 7 | 28 | 35 | |
| Post-Polio Syndrome (PPS) | 3 | 17 | 20 | |
| Posttraumatic Stress Disorder (PTSD) | 229 | 1593 | 1822 | |
| Premenstrual Dysphoric Disorder (PMDD) | 1 | 59 | 60 | |
| Primary Biliary Cholangitis | 1 | 77 | 78 | |
| Primary Ciliary Dyskinesia (PCD) | 8 | 3 | 11 | |
| Primary Hyperoxaluria (PH) | 8 | 5 | 13 | |
| Primary Immunodeficiency (PID) | 109 | 349 | 458 | |
| Primary Sclerosing Cholangitis | 3 | 26 | 29 | |
| Progressive Supranuclear Palsy (PSP) | 13 | 9 | 22 | |
| Prolactinoma | 0 | 5 | 5 | |
| Protein Deficiency | 2 | 11 | 13 | |
| Prurigo Nodularis (PN) | 1 | 8 | 9 | |
| Psoriasis Psoriatic Arthritis | 73 | 709 | 782 | |
| Psoriatic Arthritis | 37 | 347 | 384 | |
| Pulmonary Arterial Hypertension (PAH) | 223 | 883 | 1106 | |
| Pulmonary Embolism (PE) | 10 | 89 | 99 | |
| Pulmonary Fibrosis (PF) | 38 | 131 | 169 | |
| Pyloric Stenosis (Gastric Outlet Obstruction) | 5 | 4 | 9 | |
| Raynaud's Syndrome | 32 | 579 | 611 | |
| Restless Leg Syndrome (RLS) | 33 | 331 | 364 | |
| Rett Syndrome | 58 | 3 | 61 | |
| Rheumatoid Arthritis (RA) | 231 | 1694 | 1925 | |
| Rosacea | 2 | 98 | 100 | |
| Sacroiliac Joint Disease (SI) | 0 | 34 | 34 | |
| Sarcoidosis | 20 | 194 | 214 | |
| Sarcoma | 8 | 36 | 44 | |
| Scheuermann's Kyphosis | 14 | 16 | 30 | |
| Schinzel-Giedion Syndrome (SGS) | 3 | 0 | 3 | |
| Schizencephaly | 24 | 1 | 25 | |
| Schizophrenia | 189 | 197 | 386 | |
| Sciatica | 15 | 200 | 215 | |
| Scleroderma | 36 | 277 | 313 | |
| Scoliosis | 134 | 492 | 626 | |
| Secondary Adrenal insufficiency | 14 | 83 | 97 | |
| Sensory Processing Disorder (SPD) | 210 | 62 | 272 | |
| Sepsis | 4 | 19 | 23 | |
| Shaken Baby Syndrome (SBS) | 11 | 2 | 13 | |
| Shingles (Herpes Zoster) | 7 | 58 | 65 | |
| Short Bowel Syndrome (SBS, Short Gut) | 34 | 77 | 111 | |
| Sickle Cell Disease (SCD) | 411 | 904 | 1315 | |
| Sickle Cell Disease (SCD): Sickle Cell Trait | 16 | 48 | 64 | |
| Sinusitis | 25 | 164 | 189 | |
| Sjogren's Syndrome (SjS, SS) | 31 | 700 | 731 | |
| Sleep Apnea (OSA) | 203 | 1025 | 1228 | |
| Sleep Disorder | 39 | 123 | 162 | |
| Small for Gestational Age SGA) | 2 | 1 | 3 | |
| Small Intestinal Bacterial Overgrowth (SIBO) | 3 | 44 | 47 | |
| Smith-Lemli-Opitz Syndrome (SLOS) | 6 | 1 | 7 | |
| Sotos Syndrome | 5 | 1 | 6 | |
| Speech Impairment | 68 | 36 | 104 | |
| Spherocytosis | 8 | 11 | 19 | |
| Spina Bifida (SB) | 122 | 84 | 206 | |
| Spinal Cord | 165 | 713 | 878 | |
| Spinal Muscular Atrophy (SMA) | 370 | 192 | 562 | |
| Sprengel Deformity | 1 | 3 | 4 | |
| Stickler Syndrome | 14 | 11 | 25 | |
| Stiff Person Syndrome (SPS) | 2 | 13 | 15 | |
| Stomach Ulcer | 12 | 91 | 103 | |
| Stroke | 338 | 292 | 630 | |
| Subglottic Stenosis (SGS) | 6 | 8 | 14 | |
| Syncope | 5 | 83 | 88 | |
| Syringomyelia | 12 | 77 | 89 | |
| Tardive Dyskinesia (TD) | 4 | 44 | 48 | |
| Tarlov Cysts | 0 | 20 | 20 | |
| Tay Sachs (TSD) | 17 | 11 | 28 | |
| Temporomandibular joint (TMJ) | 8 | 187 | 195 | |
| Tendonitis | 2 | 76 | 78 | |
| Thalassemia | 7 | 38 | 45 | |
| Thoracic Outlet Syndrome (TOS) | 2 | 40 | 42 | |
| Thrombocytopenia (TCP) | 7 | 31 | 38 | |
| Thrombotic Thrombocytopenic Purpura (TTP) | 1 | 4 | 5 | |
| Thyroid Eye Disease (TED) | 2 | 53 | 55 | |
| Thyroid Nodule | 2 | 85 | 87 | |
| Tics | 4 | 3 | 7 | |
| Tourette's Syndrome (TS) | 57 | 50 | 107 | |
| Transient Global Amnesia (TGA) | 6 | 5 | 11 | |
| Traumatic Brain Injury (TBI) | 129 | 185 | 314 | |
| Treacher Collins syndrome (TCS) | 4 | 2 | 6 | |
| Trichotillomania (TTM) | 2 | 29 | 31 | |
| Trisomy 18 (Edwards Syndrome) | 5 | 0 | 5 | |
| Trisomy X (XXX) | 11 | 9 | 20 | |
| Tuberculosis | 5 | 11 | 16 | |
| Tuberous Sclerosis | 128 | 22 | 150 | |
| Ulcerative Colitis (UC) | 114 | 763 | 877 | |
| Undifferentiated Connective Tissue Disease (UCTD) | 4 | 59 | 63 | |
| Urea Cycle Disorder (UCD) | 12 | 26 | 38 | |
| Urticaria (Hives) | 17 | 146 | 163 | |
| Usher Syndrome | 6 | 5 | 11 | |
| Uterine Fibroids | 1 | 108 | 109 | |
| Uterine Leiomyosarcoma | 1 | 5 | 6 | |
| Uveitis | 14 | 49 | 63 | |
| Varicose Veins | 1 | 34 | 35 | |
| Vasculitis | 14 | 70 | 84 | |
| Vertebral Artery Dissection (VAD) | 1 | 10 | 11 | |
| Vertigo | 22 | 158 | 180 | |
| Vision Impairment | 403 | 787 | 1190 | |
| Vitamin B12 Deficiency | 3 | 79 | 82 | |
| Vitamin D Deficiency | 13 | 209 | 222 | |
| Vitiligo | 11 | 66 | 77 | |
| Vocal Cord Dysfunction (VCD) | 11 | 29 | 40 | |
| Von Hippel-Lindau Syndrome | 2 | 3 | 5 | |
| Von Willebrand Disease (VWD) | 161 | 299 | 460 | |
| Waldenstrom's Macroglobulinemia (WM) | 19 | 139 | 158 | |
| Wegener's Granulomatosis with Polyangiitis (GPA) | 4 | 26 | 30 | |
| Williams Syndrome (WS) | 32 | 8 | 40 | |
| Wilson's Disease (hepatolenticular degeneration) | 19 | 11 | 30 | |
| Wolff-Parkinson-White (WPW) Syndrome | 10 | 28 | 38 | |
| Wolf-Hirschhorn Syndrome (WHS) | 3 | 0 | 3 | |
| X-Linked Hypophosphatemia (XLH) | 6 | 15 | 21 | |
| Zoon vulvitis | 0 | 1 | 1 | |
| Disease/Condition - Cancer | Caregiver | Patient | Total | |
| Adrenal Cortical Cancer (Adrenal Cortex Carcinoma) | 10 | 17 | 27 | |
| Anal Cancer | 29 | 285 | 314 | |
| Bile Duct (Cholangiocarcinoma) Cancer | 27 | 38 | 65 | |
| Bladder Cancer | 77 | 124 | 201 | |
| Bone Cancer | 53 | 168 | 221 | |
| Brain and Spinal Cord Tumors in Adults | 241 | 342 | 583 | |
| Breast Cancer | 196 | 4680 | 4876 | |
| Breast Cancer in Men | 9 | 28 | 37 | |
| Cervical Cancer | 33 | 527 | 560 | |
| Colorectal (Colon) Cancer | 350 | 1360 | 1710 | |
| Endometrial (Uterine) Cancer | 48 | 820 | 868 | |
| Esophagus (Esophageal) Cancer | 134 | 163 | 297 | |
| Eye Cancer | 11 | 34 | 45 | |
| Follicular Lymphoma | 19 | 127 | 146 | |
| Gallbladder Cancer | 12 | 42 | 54 | |
| Head & Neck/Throat Cancer | 121 | 351 | 472 | |
| Hodgkin Disease | 50 | 403 | 453 | |
| Kidney Cancer | 56 | 187 | 243 | |
| Leukemia | 231 | 716 | 947 | |
| Liver Cancer | 84 | 154 | 238 | |
| Lung Cancer | 359 | 936 | 1295 | |
| Lung Carcinoid Tumor | 10 | 39 | 49 | |
| Lymphoma of the Skin | 3 | 15 | 18 | |
| Malignant Mesothelioma | 4 | 8 | 12 | |
| Multiple Myeloma | 48 | 331 | 379 | |
| Non-Hodgkin Lymphoma (NHL) | 157 | 815 | 972 | |
| Ovarian and Fallopian Tube Cancer | 86 | 922 | 1008 | |
| Pancreatic Cancer | 213 | 300 | 513 | |
| Penile Cancer | 3 | 3 | 6 | |
| Pituitary Tumors | 0 | 10 | 10 | |
| Prostate Cancer | 94 | 214 | 308 | |
| Rare Cancers | 32 | 89 | 121 | |
| Sarcoma - Adult Soft Tissue Cancer | 52 | 203 | 255 | |
| Skin Cancer - Melanoma | 49 | 297 | 346 | |
| Skin Cancer - Non-Melanoma | 31 | 130 | 161 | |
| Small Intestine Cancer | 17 | 66 | 83 | |
| Stomach Cancer | 21 | 68 | 89 | |
| Testicular Cancer | 62 | 109 | 171 | |
| Thymus Cancer | 5 | 33 | 38 | |
| Thyroid Cancer | 43 | 589 | 632 | |
| Vaginal Cancer | 4 | 46 | 50 | |
| Vulvar Cancer | 7 | 73 | 80 |
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.
