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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
    • Press Releases
  • For Patients
    • Study Opportunities for Patients and Caregivers
    • Sign Up to Participate
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Advocacy Groups
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
  • Videos
    • Meet The Patients
    • You Ask, We Answer
    • Get To Know
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping Patients and Caregivers Voice Their Opinions

Patient/Caregiver Panels

Submit a Proposal Request

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 1 3
Achalasia 5 17 22
Acne 5 97 102
Acoustic Neuroma (Vestibula Schwannoma) 1 10 11
Acromegaly 1 21 22
Addiction 38 256 294
Addison's Disease (Adrenal insufficiency) 45 176 221
Adenomyosis 1 19 20
Adhesive Capulitis (Frozen Shoulder) 3 11 14
Adrenal Cortical Carcinoma (ACC) 3 3 6
Agenesis of the Corpus Callosum (ACC) 25 4 29
Aicardi Syndrome 8 0 8
Albinism 8 14 22
Allergies 267 901 1168
Alopecia 16 63 79
Alpha 1 Antitrypsin Deficiency (A1AD) 12 63 75
Alzheimer's Disease (AD) 586 61 647
Amputation 32 43 75
Amyloidosis 3 11 14
Amyotrophic Lateral Sclerosis (ALS) 60 68 128
Anemia 52 709 761
Aneurysm 6 38 44
Ankylosing Spondylitis (AS) 21 293 314
Anoxic Brain Injury 7 4 11
Antiphospholipid Syndrome (APS) 6 82 88
Anxiety 477 3589 4066
Aphasia 7 7 14
Aplastic Anemia (AA) 39 68 107
Apraxia 38 3 41
Arachnoid Cyst 5 7 12
Arachnoiditis 1 23 24
Arteriovenous Malformation (AVM) 2 16 18
Arthrogryposis Multiplex Congenita (AMC) 22 17 39
Asthma 516 2237 2753
Ataxia 56 71 127
Atrial Fibrillation (AFIB) 46 192 238
Attention Deficit Hyperactivity Disorder (ADHD, ADD) 650 894 1544
Atypical Hemolytic Uremic Syndrome (aHUS) 24 63 87
Auditory Processing Disorder (APD) 11 8 19
Autism 936 232 1168
Autoimmune Disease 20 154 174
Autoimmune Encephalitis (AE) 5 10 15
Avascular Necrosis (AVN, Osteonecrosis) 22 152 174
Barrett's Esophagus 3 52 55
Barth Syndrome (BTHS) 6 3 9
Basal Cell Carcinoma (BCC) 4 19 23
Batten Disease 19 1 20
Behcet's Disease (BD) 6 41 47
Bell's Palsy 7 10 17
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate) 6 28 34
Beta Thalassemia (Cooley?s Anemia) 2 25 27
Bipolar 213 1087 1300
Blood Clot 13 68 81
Blood Clotting Disorder 9 58 67
Borderline Personality Disorder (BPD) 25 212 237
Brain Aneurysm 10 41 51
Brain Damage 38 16 54
Brain Tumor 50 69 119
BRCA Mutation 0 9 9
Bronchiectasis 3 38 41
Bronchitis 7 78 85
Bulging Disc 9 78 87
Bursitis 5 56 61
Campomelic Dysplasia 1 0 1
Carcinoma 2 29 31
Caroli Disease 3 1 4
Carpal Tunnel Syndrome (CTS) 12 224 236
Castleman Disease (CD) 2 4 6
Celiac Disease (CCD) 103 366 469
Cerebral Palsy (CP) 445 136 581
Cervical Dystonia 4 23 27
Charge Syndrome 6 2 8
Chiari Malformation (CM) 68 196 264
Chronic Fatigue Syndrome (CFS, ME) 14 397 411
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 12 98 110
Chronic Intestinal Pseudo-obstruction (CIPO) 5 12 17
Chronic obstructive pulmonary disease (COPD) 252 668 920
Chronic Pain, Back Pain 109 1117 1226
Chronic Venous Insufficiency (CVI) 14 25 39
Cleft 26 8 34
Clostridium difficile (C Diff) 6 38 44
Clubfoot 13 8 21
Cluster Headache 24 154 178
Cognitive Impairment (CI) 31 31 62
Color Blind 0 0 0
Complex Regional Pain Syndrome (CRPS, RSD) 20 165 185
Congenital Adrenal Hyperplasia (CAH) 9 7 16
Congenital Central Hypoventilation Syndrome (CCHS) 5 1 6
Congenital Myopathy 4 8 12
Congenital Sucrase-Isomaltase Deficiency (CSID) 8 2 10
Constipation 42 117 159
Conversion Disorder (CD) 1 9 10
Coronavirus (COVID-19) 9 36 45
Costochondritis 0 40 40
Craniocervical Instability (CCI) 2 17 19
Craniosynostosis 8 3 11
Crohn's Disease (CD) 173 1214 1387
Cushing's Disease (CS) 6 152 158
Cyclic Vomiting Syndrome (CVS) 53 120 173
Cystic Fibrosis (CF) 660 578 1238
Cytomegalovirus (CMV) 6 9 15
Dandy Walker Syndrome (DWS) 14 3 17
Deep Vein Thrombosis (DVT) 7 86 93
Degenerative Disc Disease (DDD) 48 624 672
Deletion Duplication Syndrome 179 26 205
Delta-Storage Pool Deficiency 1 1 2
Depression (MDD) 364 3718 4082
Dercum's Disease (adiposis dolorosa) 1 16 17
Dermatomyositis (DM) 7 54 61
Desmoid Tumor 0 8 8
Developmental Delay (DD) 248 29 277
Diabetes (DM) 1322 3220 4542
Diabetes (DM) Type 1 655 906 1561
Diabetes (DM) Type 2 419 1684 2103
Disruptive Mood Dysregulation Disorder (DMDD) 14 4 18
Dissociative Identity Disorder (DID, Multiple Personality Disorder) 3 31 34
Diverticulitis 7 124 131
Down Syndrome (DS) 114 6 120
Dravet Syndrome 61 2 63
Duchenne Muscular Dystrophy 223 31 254
Dupuytren's Contracture 2 16 18
Dwarfism 41 12 53
Dysautonomia 88 544 632
Dyslexia 23 22 45
Dysphagia (Difficulty Swallowing) 33 38 71
Dystonia 27 63 90
Eating Disorder 12 89 101
Eczema (Atopic Dermatitis) 96 373 469
Edema 12 39 51
Ehlers-Danlos Syndrome (EDS) 121 664 785
Empty Sella Syndrome (ESS) 0 8 8
Encephalitis 10 7 17
Encephalocele 2 0 2
Endometriosis 12 478 490
Eosinophilic Colitis (EC) 4 11 15
Eosinophilic Esophagitis (EOE) 221 196 417
Eosinophilic Gasteroenteritis (EG) 17 33 50
Epidermolysis Bullosa (EB) 3 5 8
Epilepsy 1637 877 2514
Epstein Barr Syndrome (EBV) 4 59 63
Erb's Palsy 3 0 3
Erectile Dysfunction (ED) 6 26 32
Erythromelalgia 0 15 15
Esophageal Atresia (EA) 7 4 11
Essential Thrombocythemia 0 2 2
Essential Tremor 16 56 72
Exocrine Pancreatic Insufficiency (EPI) 1 11 12
Fabry disease 28 189 217
Failure to Thrive (FTT) 33 6 39
Familial Adenomatous Polyposis (FAP) 4 34 38
Familial Hypercholesterolemia (FH) 4 13 17
Familial Mediterranean Fever (FMF) 4 5 9
Fatty Oxidation Disorder (FAOD) 50 22 72
Fetal Alcohol Syndrome (FAS) 20 0 20
Fibrodysplasia Ossificans Progressiva (FOP) 4 6 10
Fibromuscular Dysplasia (FMD) 2 11 13
Fibromyalgia (FM) 121 2041 2162
Fibrous Dysplasia 1 9 10
Fistula 6 24 30
FOXG1 Syndrome 16 0 16
Fragile X Syndrome (FXS) 51 19 70
Friedreich's Ataxia (FA) 10 11 21
Galactosemia 3 0 3
Gall Stones 2 30 32
Ganglioneuroblastoma 2 0 2
Gardner's Syndrome 0 1 1
Gastric Dysmotility 6 29 35
Gastritis 13 123 136
Gastroesophageal Reflux Disease (GERD) 180 1054 1234
Gastrointestinal Stromal Tumor (GIST) 3 10 13
Gastroparesis (GP) 69 432 501
Gastroschisis 3 3 6
Gastrostomy Tube (G-tube) 22 20 42
Gaucher Disease (GD) 12 38 50
Giant Cell Arteritis (GCA) 0 5 5
Gluten Intolerance 3 45 48
Glycogen Storage Disease (GSD) 5 7 12
Gout 25 111 136
Graft Versus Host Disease (GVHD) 6 20 26
Granular Cell Tumors 0 0 0
Grave's Disease (GD) 13 184 197
Guillain-Barre Syndrome (GBS) 5 43 48
Hansen's Disease (Leprosy) 0 0 0
Hashimoto's Disease (HT) 39 789 828
Headache 12 131 143
Hearing Loss 154 252 406
Heart Disease 574 1180 1754
Hemangioma 4 10 14
Hemochromatosis (Iron Overload) 11 80 91
Hemophilia 699 700 1399
Hemophilia A 471 416 887
Hemophilia B 178 167 345
Hemorrhoids 2 33 35
Hepatitis 46 233 279
Hereditary Angioedema (HAE) 5 40 45
Hereditary hemorrhagic telangiectasia (HHT) 3 12 15
Hereditary Spastic Paraparesis (HSP) 10 55 65
Hereditary Spastic Paraplegia (HSP) 13 26 39
Hernia 23 138 161
Herpes (HSV) 7 103 110
Hidradenitis Suppurativa (HS) 1 269 270
High Blood Pressure (Hypertension, HBP) 447 2538 2985
High Cholesterol (Hyperlipidemia) 142 1051 1193
Hip Dysplasia 22 31 53
Hip Replacement 15 43 58
Hirschsprung's Disease (HD, HSCR) 39 8 47
HIV 62 512 574
Holoprosencephaly (HPE) 3 0 3
Horner Syndrome 2 4 6
Human Growth Hormone Deficiency (GHD) 147 102 249
Human Papillomavirus (Human Papillomavirus (HPV) 1 45 46
Huntington's Disease (HD) 234 119 353
Hydrocephalus 137 83 220
Hyperemesis Gravidarum (HG, Morning Sickness) 1 9 10
Hypereosinophilic Syndrome (HES) 4 11 15
Hyperhidrosis 2 38 40
Hyperkalemia 4 12 16
Hypermobility Syndrome 9 56 65
Hyperoxaluria 1 1 2
Hyperparathyroidism 10 69 79
Hypersomnia 0 99 99
Hyperthyroidism 9 111 120
Hypoglycemia (Low Blood Sugar) 12 140 152
Hypokalemia 1 35 36
Hypokalemic Periodic Paralysis 10 29 39
Hypoparathyroidism 12 71 83
Hypophosphatasia (HPP) 1 9 10
Hypoplasia of the Corpus Callosum 2 2 4
Hypothyroidism 118 1546 1664
Hypotonia 83 10 93
Hypoxic Ischemic Encephalopathy (HIE) 26 4 30
Ichthyosis 3 3 6
Immune Thrombocytopenic Purpura (ITP) 12 93 105
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS) 3 9 12
Incontinence 37 115 152
Incontinentia Pigmenti (IP) 18 3 21
Infertility 1 41 42
Insomnia 35 467 502
Intellectual Disability 100 18 118
Intellectually Disabled 4 1 5
Intermittent Explosive Disorder (IED) 6 4 10
Interstitial Cystitis (IC) 7 185 192
Interstitial Lung Disease (ILD) 16 70 86
Intracranial Hypertension (IH, Pseudotumor Cerebri) 14 132 146
Iritis 0 17 17
Irritable Bowel Syndrome (IBS) 53 849 902
Juvenile Arthritis (JA) 89 69 158
Kaposi Sarcoma (KS) 1 1 2
Kawasaki Disease 3 1 4
Kidney Disease 251 782 1033
Klippel-Feil Syndrome (KFS) 6 4 10
Klippel-Trenaunay Syndrome (KTS) 1 3 4
Knee Replacement 9 44 53
Lactose Intolerance 7 38 45
Lambert-Eaton myasthenic syndrome (LEMS) 0 14 14
Landau Kleffner Syndrome (LKS) 4 1 5
Langerhans Cell Histiocytosis (LCH) 6 5 11
Laryngomalacia 16 1 17
Learning Disability 46 29 75
Leiomyosarcoma 0 4 4
Legg-Calve-Perthes Disease (LCPD) 4 5 9
Lennox Gastaut Syndrome (LGS) 334 10 344
LEOPARD Syndrome 1 2 3
Leukemia 65 136 201
Leukodsytrophy 17 12 29
Lichen Planus 0 15 15
Lichen Sclerosis (LS) 4 35 39
Lipedema 2 29 31
Liposarcoma 0 4 4
Lissencephaly 18 0 18
Liver Disease (not hepatitis) 79 308 387
Loin Pain Hematuria Syndrome (LPHS) 0 7 7
Loss of Mobility 15 16 31
Low Blood Pressure (Hypotension) 10 115 125
Low Testosterone 3 28 31
Lung Disease 94 111 205
Lupus 117 1640 1757
Lyme Disease 21 137 158
Lymphedema 10 124 134
Lymphocytic Colitis 3 18 21
Lymphoma 11 35 46
Lymphoproliferative Disease (LPD) 3 6 9
Macular Degeneration 29 121 150
Maple Syrup Urine Disease (MSUD) 7 6 13
Marfan Syndrome (MFS) 9 24 33
Mastocytosis (Mast Cell Activating Disease, MCAD) 34 235 269
McCune-Albright Syndrome (MAS) 0 7 7
Memory Loss 23 38 61
Meniere's Disease (MD) 5 65 70
Mental Illness 42 62 104
Mesothelioma 2 1 3
Metabolic Syndrome 8 21 29
Methicillin-Resistant Staphylococcus Aureus (MRSA) 3 13 16
Microcephaly 43 1 44
Microtia 26 4 30
Migraine 125 1970 2095
Mitochondrial Disease 58 57 115
Mixed Connective Tissue Disease (MCTD) 9 159 168
Moebius Syndrome 4 3 7
Monoclonal gammopathy of undetermined significance (MGUS) 0 20 20
MGUS 0 0 0
Mood Disorder 22 48 70
Morgellons Disease (MD) 0 3 3
Moyamoya Disease 4 11 15
MTHFR 11 75 86
Mucopolysaccharidoses (MPS) 27 5 32
Multiple Endocrine Neoplasia (MEN) 4 9 13
Multiple Myeloma (MM) 23 104 127
Multiple Sclerosis (MS) 313 3945 4258
Multiple System Atrophy (MSA) 5 7 12
Muscular Dystrophy (MD) 338 231 569
Myasthenia Gravis (MG) 71 473 544
Myelin oligodendrocyte glycoprotein Antibody-Associated Disease (MOG-Ab) 5 12 17
Myelodysplastic syndrome (MDS) 26 83 109
Myelofibrosis 2 13 15
Myopathy 11 22 33
Myositis 5 25 30
Narcolepsy 28 440 468
Nasal Polyps 5 55 60
NASH 10 30 40
Neck Surgery 2 9 11
Neuralgia 5 149 154
Neuroblastoma 6 2 8
Neurofibromatosis (NF) 23 48 71
Neurogenic Bladder 29 96 125
Neuromyelitis optica (NMO) 22 108 130
Neuropathy 100 795 895
Neutropenia 26 23 49
Niemann-Pick Disease 3 5 8
Non-Hodgkin's Lymphoma (NHL) 8 87 95
Non-radiographic Axial Spondyloarthritis (nrAxSpA) 0 14 14
Noonan Syndrome (NS) 7 2 9
Obesity 41 503 544
Obsessive Compulsive Disorder (OCD) 79 292 371
Oppositional Defiant Disorder (ODD) 94 27 121
Organ Transplant 58 163 221
Organic Acidemia (OA) 43 5 48
Osteoarthritis (OA) 154 1477 1631
Osteogenesis Imperfecta (OI) 27 43 70
Osteomyelitis (OM) 4 10 14
Osteopenia 23 154 177
Osteoporosis 48 382 430
Ovarian Cyst 1 69 70
Overactive Bladder (OAB) 11 86 97
Pancreatitis 17 81 98
Paralysis 71 81 152
Paraneoplastic Syndrome 2 6 8
Parkinson's Disease (PD) 241 334 575
Paroxysmal Nocturnal Hemoglobinuria (PNH) 40 132 172
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep 15 11 26
Pelvic Floor Dysfunction 2 43 45
Pemphigus 16 127 143
Periventricular Leukomalacia (PVL) 13 0 13
Personality Disorder 2 8 10
Pfeiffer Syndrome 2 0 2
Phenylketonuria (PKU) 22 22 44
Pheochromocytoma (PCC) 2 12 14
Pheochromocytoma DUPLICATE 0 1 1
Pierre Robin Sequence (PRS) 10 2 12
Pituitary Tumor 9 61 70
Plantar Fasciitis (PF) 3 103 106
Pneumonia 7 27 34
Poland Syndrome 0 4 4
Polio 7 4 11
Polychrondritis 1 43 44
Polycystic Ovarian Syndrome (PCOS) 27 605 632
Polycythemia Vera (PV) 0 42 42
Polymicrogyria (PMG) 14 1 15
Polymyalgia Rheumatica (PMR) 2 18 20
Polymyositis (PM) 1 26 27
Pompe Disease 26 15 41
Porphyria 4 18 22
Post-Polio Syndrome (PPS) 2 13 15
Posttraumatic Stress Disorder (PTSD) 166 1211 1377
Premenstrual Dysphoric Disorder (PMDD) 2 44 46
Primary Biliary Cholangitis 1 56 57
Primary Ciliary Dyskinesia (PCD) 6 2 8
Primary Hyperoxaluria (PH) 6 4 10
Primary Immunodeficiency (PID) 87 278 365
Primary Sclerosing Cholangitis 3 20 23
Progressive Supranuclear Palsy (PSP) 12 9 21
Prolactinoma 0 5 5
Protein Deficiency 1 8 9
Prurigo Nodularis (PN) 1 3 4
Psoriasis Psoriatic Arthritis 55 567 622
Psoriatic Arthritis 28 293 321
Pulmonary Arterial Hypertension (PAH) 130 731 861
Pulmonary Embolism (PE) 4 66 70
Pulmonary Fibrosis (PF) 25 84 109
Pyloric Stenosis (Gastric Outlet Obstruction) 2 2 4
Raynaud's Syndrome 27 416 443
Restless Leg Syndrome (RLS) 22 266 288
Rett Syndrome 56 3 59
Rheumatoid Arthritis (RA) 157 1352 1509
Rosacea 2 76 78
Sacroiliac Joint Disease (SI) 0 24 24
Sarcoidosis 11 118 129
Sarcoma 5 13 18
Scheuermann's Kyphosis 10 16 26
Schinzel-Giedion Syndrome (SGS) 2 0 2
Schizencephaly 20 1 21
Schizophrenia 116 136 252
Sciatica 8 146 154
Scleroderma 21 202 223
Scoliosis 106 387 493
Secondary Adrenal insufficiency 10 69 79
Sensory Processing Disorder (SPD) 135 43 178
Sepsis 3 16 19
Shaken Baby Syndrome (SBS) 9 2 11
Shingles (Herpes Zoster) 6 39 45
Short Bowel Syndrome (SBS, Short Gut) 21 65 86
Sickle Cell Disease (SCD) 299 744 1043
Sickle Cell Disease (SCD): Sickle Cell Trait 8 37 45
Sinusitis 16 124 140
Sjogren's Syndrome (SjS, SS) 25 543 568
Sleep Apnea (OSA) 149 793 942
Sleep Disorder 23 98 121
Small for Gestational Age SGA) 2 0 2
Small Intestinal Bacterial Overgrowth (SIBO) 3 36 39
Smith-Lemli-Opitz Syndrome (SLOS) 3 0 3
Sotos Syndrome 3 1 4
Speech Impairment 52 30 82
Spherocytosis 4 8 12
Spina Bifida (SB) 83 63 146
Spinal Cord 89 510 599
Spinal Muscular Atrophy (SMA) 277 155 432
Sprengel Deformity 2 3 5
Squamous Cell Carcinoma (SCC) 4 44 48
Stickler Syndrome 9 8 17
Stiff Person Syndrome (SPS) 2 10 12
Stomach Ulcer 8 61 69
Stroke 193 214 407
Subglottic Stenosis (SGS) 6 7 13
Syncope 5 65 70
Syringomyelia 7 49 56
Tardive Dyskinesia (TD) 0 25 25
Tarlov Cysts 0 12 12
Tay Sachs (TSD) 15 7 22
Temporomandibular joint (TMJ) 5 142 147
Tendonitis 3 53 56
Thalassemia 6 20 26
Thoracic Outlet Syndrome (TOS) 1 27 28
Thrombocytopenia (TCP) 5 22 27
Thrombotic Thrombocytopenic Purpura (TTP) 0 2 2
Thyroid Eye Disease (TED) 2 45 47
Thyroid Nodule 3 62 65
Tics 2 0 2
Tourette's Syndrome (TS) 44 34 78
Transient Global Amnesia (TGA) 3 4 7
Traumatic Brain Injury (TBI) 83 138 221
Treacher Collins syndrome (TCS) 1 2 3
Trichotillomania (TTM) 0 20 20
Trisomy 18 (Edwards Syndrome) 5 0 5
Trisomy X (XXX) 7 7 14
Tuberculosis 3 10 13
Tuberous Sclerosis 122 20 142
Ulcerative Colitis (UC) 85 639 724
Undifferentiated Connective Tissue Disease (UCTD) 2 42 44
Urea Cycle Disorder (UCD) 8 14 22
Urticaria (Hives) 9 51 60
Usher Syndrome 5 5 10
Uterine Fibroids 1 71 72
Uterine Leiomyosarcoma 1 3 4
Uveitis 13 38 51
Varicose Veins 0 28 28
Vasculitis 10 49 59
Vertebral Artery Dissection (VAD) 1 6 7
Vertigo 19 127 146
Vision Impairment 273 621 894
Vitamin B12 Deficiency 2 55 57
Vitamin D Deficiency 10 160 170
Vitiligo 9 47 56
Vocal Cord Dysfunction (VCD) 10 19 29
Von Hippel-Lindau Syndrome 0 2 2
Von Willebrand Disease (VWD) 107 223 330
Waldenstrom's Macroglobulinemia (WM) 3 73 76
Wegener's Granulomatosis with Polyangiitis (GPA) 3 24 27
Williams Syndrome (WS) 17 6 23
Wilson's Disease (hepatolenticular degeneration) 0 2 2
Wolff-Parkinson-White (WPW) Syndrome 6 22 28
Wolf-Hirschhorn Syndrome (WHS) 1 0 1
X-Linked Hypophosphatemia (XLH) 5 9 14
Zoon vulvitis 0 1 1
Disease/Condition - Cancer Caregiver Patient Total
Adrenal Cortical Cancer (Adrenal Cortex Carcinoma) 12 24 36
Anal Cancer 17 216 233
Bile Duct (Cholangiocarcinoma) Cancer 26 42 68
Bladder Cancer 74 96 170
Bone Cancer 31 154 185
Brain and Spinal Cord Tumors in Adults 181 255 436
Breast Cancer 168 3551 3719
Breast Cancer in Men 12 30 42
Cancer of Unknown Primary 193 301 494
Cervical Cancer 30 439 469
Colorectal (Colon) Cancer 370 1313 1683
Endometrial (Uterine) Cancer 30 591 621
Esophagus (Esophageal) Cancer 94 121 215
Eye Cancer 8 16 24
Follicular Lymphoma 22 144 166
Gallbladder Cancer 9 32 41
Head & Neck/Throat Cancer 71 147 218
Hodgkin Disease 56 364 420
Kidney Cancer 30 70 100
Leukemia 92 230 322
Liver Cancer 74 156 230
Lung Cancer 152 336 488
Lung Carcinoid Tumor 5 30 35
Lymphoma of the Skin 2 8 10
Malignant Mesothelioma 0 5 5
Multiple Myeloma 42 302 344
Non-Hodgkin Lymphoma (NHL) 79 339 418
Ovarian and Fallopian Tube Cancer 77 747 824
Pancreatic Cancer 174 262 436
Penile Cancer 2 1 3
Pituitary Tumors 10 70 80
Prostate Cancer 143 187 330
Rare Cancers 27 64 91
Sarcoma - Adult Soft Tissue Cancer 36 122 158
Skin Cancer - Melanoma 50 261 311
Skin Cancer - Non-Melanoma 3 27 30
Small Intestine Cancer 7 8 15
Stomach Cancer 15 33 48
Testicular Cancer 42 62 104
Thymus Cancer 3 7 10
Thyroid Cancer 31 386 417
Vaginal Cancer 2 37 39
Vulvar Cancer 3 47 50

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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Latest Blog Posts

  • Rare Patient Voice Expands to Europe
  • Thanks to We’re Not Drunk, We Have MS, our Terrific MS Partner
  • Thanks to WhatNext, Our Terrific Cancer Patient Partner
  • The North Wind and the Sun
  • Should companies do marketing to their market research panels?

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