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 advocacy team is always busy developing relationships with referral partners, advocacy groups, and patient support networks throughout the world.
The following is a list of the main rare and non-rare diseases and conditions covered. For current patient counts, also available by country, please use our PAM proposal tool or reach out to the RPV Sales team at sales@rarepatientvoice.com.
ABCD Syndrome
Achalasia
Acne
Acoustic Neuroma (Vestibula Schwannoma)
Acromegaly
Adams-Oliver Syndrome (AOS)
Addiction
Addison's Disease (Adrenal insufficiency)
Adenomyosis
Adhesive Capsulitis (Frozen Shoulder)
Adrenal Cortical Carcinoma (ACC)
Agenesis of the Corpus Callosum (ACC)
Aicardi Syndrome
Alagille Syndrome (AS)
Albinism
Alice in Wonderland Syndrome (AWS)
Alkaptonuria
Allergies
Alopecia
Alpha 1 Antitrypsin Deficiency (A1AD)
Alpha-Mannosidosis
Alternating Hemiplegia of Childhood (AHC)
Alzheimer's Disease (AD)
Amniotic Band Syndrome
Amplified Musculoskeletal Pain Syndrome
Amputation
Amyloidosis
Amyotrophic Lateral Sclerosis (ALS)
Anal Cancer
Anemia
Aneurysm
Anhidrosis (Hypohydrosis)
Ankylosing Spondylitis (AS)
Anosmia (loss of smell)
Anoxic Brain Injury
Antiphospholipid Syndrome (APS)
Antisynthetase Syndrome
Anxiety
Aortic Disease
Aphantasia
Aphasia
Aplastic Anemia (AA)
Appendix Cancer
Apraxia
Arachnoid Cyst
Arachnoiditis
Arteriovenous Malformation (AVM)
Arthrogryposis Multiplex Congenita (AMC)
Aspirin-like defect (ALD)
Asthma
Ataxia
Atrial Fibrillation (AFIB)
Atrophic Vaginitis
Attention Deficit Hyperactivity Disorder (ADHD, ADD)
Atypical Hemolytic Uremic Syndrome (aHUS)
Auditory Processing Disorder (APD)
Autism
Autoimmune Encephalitis (AE)
Autoimmune
Avascular Necrosis (AVN, Osteonecrosis)
Bardet Biedl Syndrome (BBS)
Barrett's Esophagus
Barth Syndrome (BTHS)
Bartonella
Batten Disease
Beckwith-Wiedemann Syndrome (BWS)
Behcet's Disease (BD)
Bell's Palsy
Benign Prostatic Hyperplasia (BPH, Enlarged Prostate)
Beta Thalassemia (Cooley’s Anemia)
Bile Acid Malabsorption (BAD)
Bile Duct Cancer (Cholangiocarcinoma)
Bipolar
Bladder Cancer
Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
Blood Cancer
Blood Clot
Blood Clotting Disorder
Blount's Disease
Bone Cancer
Bone Marrow Transplant (BMT) (Stem Cell Transplant)
Borderline Personality Disorder (BPD)
Brain Aneurysm
Brain Cancer
Brain Damage
Brain Tumor
BRCA Mutation
Breast Cancer (BC)
Breast Cancer in Men
Breast Implant Illness
Bronchiectasis
Bronchitis
Bronchopulmonary Dysplasia (BPD)
Bulging Disc
Bursitis
Calcinosis
Calciphylaxis
Campomelic Dysplasia
Cancer
Candidiasis (Yeast Infection)
Capillary Lymphatic Venous Malformations (CLVMs)
Carcinoma
Cardiofaciocutaneous Syndrome (CFC syndrome)
Carnitine Deficiency
Caroli Disease
Carpal Tunnel Syndrome (CTS)
Castleman Disease (CD)
Catheter
Cauda Equina Syndrome
Celiac Disease (CCD)
Cellulitis
Central Pain Syndrome (CPS)
Cerebellar Atrophy
Cerebral Amyloid Angiopathy
Cerebral Cavernous Malformations (CCMs)
Cerebral Palsy (CP)
Cervical Cancer
Cervical Dystonia
Charge Syndrome
Chiari Malformation (CM)
Chilblains (Pernio)
Chronic cough
Chronic Fatigue Syndrome (CFS, ME)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Chronic Intestinal Pseudo-obstruction (CIPO)
Chronic obstructive pulmonary disease (COPD)
Chronic Pain
Chronic Venous Insufficiency (CVI)
Cleft
Clostridium difficile (C Diff)
Clubfoot
Cluster Headache
Coffin-Lowry Syndrome (CLS)
Cognitive Impairment (CI)
Colon Polyps
Colonic Inertia
Color Blind
Colorectal (Colon) Cancer
Complex Regional Pain Syndrome (CRPS, RSD)
Congenital Adrenal Hyperplasia (CAH)
Congenital Central Hypoventilation Syndrome (CCHS)
Congenital Myopathy
Congenital Sucrase-Isomaltase Deficiency (CSID)
Constipation
Conversion Disorder (CD)
Coronavirus (COVID-19)
Cortical Dysplasia
Costochondritis
Cowden Syndrome (CS)
Craniocervical Instability (CCI)
Craniosynostosis
Crohn's Disease (CD)
Cushing's Syndrome (Hypercortisolism)
Cyclic Vomiting Syndrome (CVS)
Cystic Fibrosis (CF)
Cystic Hygroma
Cystinosis
Cytomegalovirus (CMV)
Dandy Walker Syndrome (DWS)
Danon Disease
Darier Disease (DD Keratosis Follicularis)
Deep Vein Thrombosis (DVT)
Degenerative Disc Disease (DDD)
Deletion Duplication Syndrome
Delta-Storage Pool Deficiency
Depression (MDD)
Dercum's Disease (adiposis dolorosa)
Dermatomyositis (DM)
Desmoid Tumor
Developmental Delay (DD)
Diabetes (DM)
Disabled
Disruptive Mood Dysregulation Disorder (DMDD)
Dissociative Identity Disorder (DID, Multiple Personality Disorder)
Diverticulitis
Down Syndrome (DS)
Dry Mouth
Duodenitis
Dupuytren's Contracture
Dwarfism
Dysarthria (Slurred Speech)
Dysautonomia
Dyskeratosis Congenita
Dyslexia
Dysmenorrhea (Painful Menstruation)
Dysphagia (Difficulty Swallowing)
Dystonia
Ear Cancer
Eating Disorder
Eczema (Atopic Dermatitis)
Edema
Ehlers-Danlos Syndrome (EDS)
Elephantiasis (Lymphatic Filariasis)
Empty Sella Syndrome (ESS)
Encephalitis
Encephalocele
Endometrial Cancer
Endometriosis
Enlarged Spleen (Splenomegaly)
Enteric Hyperoxaluria
Eosinophilic Colitis (EC)
Eosinophilic Esophagitis (EOE)
Eosinophilic Gasteroenteritis (EG)
Epicondylitis (Tennis Elbow)
Epidermolysis Bullosa (EB)
Epilepsy
Epithelial Basement Membrane Dystrophy
Epstein Barr Syndrome (EBV)
Erb's Palsy
Erectile Dysfunction (ED)
Erythema Nodosum
Erythromelalgia
Esophageal Atresia (EA)
Esophageal Cancer
Esophageal Varices
Essential Thrombocythemia
Essential Tremor
Ewing's Sarcoma
Exocrine Pancreatic Insufficiency (EPI)
Eye Cancer
Fabry disease
Failure to Thrive (FTT)
Familial Adenomatous Polyposis (FAP)
Familial Chylomicronemia Syndrome (FCS)
Familial Hypercholesterolemia (FH)
Familial Mediterranean Fever (FMF)
Fatty Oxidation Disorder (FAOD)
Feeding Tube
Fetal Alcohol Syndrome (FAS)
Fibrocystic Breasts
Fibrodysplasia Ossificans Progressiva (FOP)
Fibromatosis
Fibromuscular Dysplasia (FMD)
Fibromyalgia (FM)
Fibrosing Mediastinitis
Fibrous Dysplasia
Fistula
Foot Drop
FOXG1 Syndrome
Fragile X Syndrome (FXS)
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Friedreich's Ataxia (FA)
Functional Neurological Disorder (FND)
G6PD deficiency (glucose-6-phosphate-dehydrogenase deficiency)
Galactosemia
Gall Stones
Ganglioneuroblastoma
Gastric Bypass
Gastric Dysmotility
Gastritis
Gastroesophageal Junction Cancer (GOJ) (Oesophago Gastric Junctional)
Gastroesophageal Reflux Disease (GERD)
Gastrointestinal Stromal Tumor (GIST)
Gastroparesis (GP)
Gastroschisis
Gaucher Disease (GD)
Gender Dysphoria
Giant Cell Arteritis (GCA)
Glucose Transporter Deficiency (GLUT1DS)
Gluten Intolerance
Glycogen Storage Disease (GSD)
Goiter
Goldenhar Syndrome
Gout
Graft Versus Host Disease (GVHD)
Granular Cell Tumors
Granuloma Annulare (GA)
Grave's Disease (GD)
Guillain-Barre Syndrome (GBS)
Hansen's Disease (Leprosy)
Hashimoto's Disease (HT)
Head and Neck Cancer
Headache
Hearing Aid
Hearing Loss
Heart Disease
HELLP Syndrome
Hemangioma
Hemihyperplasia
Hemochromatosis (Iron Overload)
Hemolytic Disease of the Fetus and Newborn (HDFN)
Hemophilia
Hemorrhoids
Hepatitis
Hereditary alpha-tryptasemia (H?T)
Hereditary Angioedema (HAE)
Hereditary hemorrhagic telangiectasia (HHT)
Hereditary Spastic Paraparesis (HSP)
Hereditary Spastic Paraplegia (HSP)
Hernia
Herpes (HSV)
Hidradenitis Suppurativa (HS)
High Blood Pressure (Hypertension, HBP)
High Cholesterol (Hyperlipidemia)
Hip Dysplasia
Hip Replacement
Hirschsprung's Disease (HD, HSCR)
Hirsutism
HIV
Hodgkins Lymphoma
Holoprosencephaly (HPE)
Homocystinuria (HCU)
Horner Syndrome
Human Growth Hormone Deficiency (GHD)
Human Papillomavirus (Human Papillomavirus (HPV)
Huntington's Disease (HD)
Hydrocephalus
Hyper-IgA Syndrome
Hyperaldosteronism
Hyperemesis Gravidarum (HG, Morning Sickness)
Hypereosinophilic Syndrome (HES)
Hyperhidrosis
Hyperkalemia
Hypermobility Syndrome
Hyperoxaluria
Hyperparathyroidism
Hypersomnia
Hyperthyroidism
Hypocalcemia
Hypoglycemia (Low Blood Sugar)
Hypohidrotic Ectodermal Dysplasia (HED)
Hypokalemia
Hypokalemic Periodic Paralysis
Hyponatremia
Hypoparathyroidism
Hypophosphatasia (HPP)
Hypoplasia of the Corpus Callosum
Hypothyroidism
Hypotonia
Hypoxic Ischemic Encephalopathy (HIE)
Hysterectomy
Ichthyosis
IgG 4 related disease (IgG4-RD)
Immune Thrombocytopenic Purpura (ITP)
Immunoglobulin Monoclonal Gammopathy of Undetermined Significance (IgM-MGUS)
Incontinence
Incontinentia Pigmenti (IP)
Infertility
Insomnia
Intellectual Disability
Intermittent Explosive Disorder (IED)
Interstitial Cystitis (IC)
Interstitial Lung Disease (ILD)
Intracranial Hemorrhage (Brain Bleeds)
Intracranial Hypertension (IH, Pseudotumor Cerebri)
intracranial Pressure (ICP)
Iritis
Irritable Bowel Syndrome (IBS)
Ischemic Colitis
Jansen's Metaphyseal Chondrodysplasia
Juvenile Arthritis (JA)
Kabuki Syndrome
Kaposi Sarcoma (KS)
Kawasaki Disease
Keratosis Pilaris (follicular keratosis)
Kidney Disease
Klinefelter Syndrome (XXY Syndrome)
Klippel-Feil Syndrome (KFS)
Klippel-Trenaunay Syndrome (KTS)
Knee Replacement
Lactose Intolerance
Lamb-Shaffer Syndrome
Lambert-Eaton myasthenic syndrome (LEMS)
Landau Kleffner Syndrome (LKS)
Langerhans Cell Histiocytosis (LCH)
Larsen syndrome
Laryngeal Cancer
Laryngomalacia
Laurence-Moon-Bardet-Biedl syndrome (LMBBS)
Learning Disability
Legg-Calve-Perthes Disease (LCPD)
Leiomyosarcoma
LEOPARD Syndrome
Leukemia
Leukocytosis
Leukodystrophy
Leukopenia
Lichen Planus
Lichen Sclerosus (LS)
Lipedema
Lipodystrophy
Liposarcoma
Lissencephaly
Livedo Reticularis (LR)
Liver Cancer
Liver Disease (not hepatitis)
Loeys Dietz Syndrome
Loin Pain Hematuria Syndrome (LPHS)
Loss of Mobility
Low Blood Pressure (Hypotension)
Low Testosterone
Lung Cancer
Lung Disease
Lupus
Lyme Disease
Lymphedema
Lymphocytic Colitis
Lymphoma
Lymphoproliferative Disease (LPD)
Lynch Syndrome (Hereditary Nonpolyposis Colorectal Cancer HNPCC)
Macular Degeneration
Macular Telangiectasia (MacTel)
Mal de debarquement Syndrome (MdDS)
Malabsorption
Malignant Hyperthermia (MH)
Maple Syrup Urine Disease (MSUD)
Marfan Syndrome (MFS)
Mastocytosis (Mast Cell Activating Disease, MCAD)
May Thurner Syndrome
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome
McCune-Albright Syndrome (MAS)
Median arcuate ligament syndrome (MALS)
Memory Loss
Meniere's Disease (MD)
Menopause
Menorrhagia (Heavy Menstrual Bleeding, Heavy Periods)
Mental Illness
Mesothelioma
Metabolic Syndrome
Metatarsalgia
Methicillin-Resistant Staphylococcus Aureus (MRSA)
Microcephaly
Microscopic Colitis
Microtia
Migraine
Misophonia
Mitochondrial Disease
Mixed Connective Tissue Disease (MCTD)
Moebius Syndrome
Monoclonal gammopathy of undetermined significance (MGUS)
Mood Disorder
Morgellons Disease (MD)
Moyamoya Disease
MTHFR
Mucopolysaccharidoses (MPS)
Multiple Endocrine Neoplasia (MEN)
Multiple Myeloma (MM)
Multiple Sclerosis (MS)
Multiple System Atrophy (MSA)
Muscle Spasms
Muscle Tension Dysphonia (MTD)
Muscular Dystrophy (MD)
Myasthenia Gravis (MG)
Mycobacterium Avium Complex (MAC)
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAFD)
Myelodysplastic syndrome (MDS)
Myelofibrosis
Myeloproliferative Neoplasms
Myopathy
Myositis
Narcolepsy
Nasal Polyps
Nasopharyngeal Carcinoma (NPC)
Neck Cancer
Neck Surgery
Neuralgia
Neuroblastoma
Neuroendocrine Cancer (NET) (Carcinoid Cancer)
Neurofibromatosis (NF)
Neurogenic Bladder
Neurogenic Bowel
Neuromyelitis optica (NMO)
Neuropathy
Neurotrophic Keratitis
Neutropenia
Niemann-Pick Disease
Non-Hodgkin's Lymphoma (NHL)
Non-radiographic Axial Spondyloarthritis (nrAxSpA)
Nonspecific Interstitial Pneumonia (NSIP)
Nontuberculous Mycobacterial (NTM)
Noonan Syndrome (NS)
Obesity
Obsessive Compulsive Disorder (OCD)
Oppositional Defiant Disorder (ODD)
Oral Cancer
Organ Transplant
Organic Acidemia (OA)
Osteoarthritis (OA)
Osteogenesis Imperfecta (OI)
Osteomyelitis (OM)
Osteopenia
Osteoporosis
Ostomy
Ovarian Cancer
Ovarian Cyst
Overactive Bladder (OAB)
Paget's
Palmoplantar Pustulosis
Pancreatic Cancer
Pancreatitis
Paraganglioma
Paralysis
Paraneoplastic Syndrome
Parkinson's Disease (PD)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS)
Pelvic Congestion Syndrome (PCS)
Pelvic Floor Dysfunction
Pelvic Inflammatory Disease (PID)
Pemphigus / Pemphigoid
Pendred Syndrome
Periodic Limb Movement Disorder (PLMD)
Periodontitis (Gum Disease)
Perivascular Epithelioid Cell Tumour (PEComas)
Periventricular Leukomalacia (PVL)
Persistent Genital Arousal Disorder
Personality Disorder
Peyronie's Disease (Penile Fibrosis)
Pfeiffer Syndrome
Phenylketonuria (PKU)
Pheochromocytoma (PCC)
Pierre Robin Sequence (PRS)
Pituitary Tumor
Plagiocephaly (Flat Head Syndrome)
Plantar Fasciitis (PF)
Pneumonia
Poland Syndrome
Polio
Polychondritis
Polycystic Ovarian Syndrome (PCOS)
Polycythemia Vera (PV)
Polymicrogyria (PMG)
Polymyalgia Rheumatica (PMR)
Polymyositis (PM)
Pompe Disease
Popliteal Artery Entrapment Syndrome (PAES)
Porphyria
Post-Polio Syndrome (PPS)
Posttraumatic Stress Disorder (PTSD)
Pre-exposure Prophylaxis (PrEP)
Precocious Puberty
Premature Ovarian Failure (POF) (Primary Ovarian Insufficiency POI)
Premenstrual Dysphoric Disorder (PMDD)
Primary Ciliary Dyskinesia (PCD)
Primary Hyperoxaluria (PH)
Primary Immunodeficiency (PIDD)
Primary Peritoneal
Progressive Multifocal Leukoencephalopathy (PML)
Progressive Supranuclear Palsy (PSP)
Prolactinoma
Prostate Cancer
Protein Deficiency
Proteinuria (Protein in Urine)
Prurigo Nodularis (PN)
Pseudobulbar Affect (PBA)
Psoriasis (PsO)
Psoriatic Arthritis (PsA)
Ptosis (Drooping eye, Blepharoptosis)
Pulmonary Arterial Hypertension (PAH)
Pulmonary Embolism (PE)
Pulmonary Fibrosis (PF)
Pyloric Stenosis (Gastric Outlet Obstruction)
Pyoderma Gangrenosum (PG)
Pyruvate Kinase Deficiency (PKD)
Raynaud's Syndrome
Rectal Cancer (CRC)
Rectocele
Renal Cell Carcinoma (Kidney Cancer, RCC)
Respiratory Disease
Respiratory Syncytial Virus (RSV) Infection
Restless Leg Syndrome (RLS)
Retroperitoneal Fibrosis
Rheumatoid Arthritis (RA)
Rickets (Osteomalacia)
Rocky Mountain Spotted Fever (RMSF)
Rosacea
Rubella- German Measles
Sacroiliac Joint Disease (SI)
Sarcoidosis
Sarcoma
Sarcopenia
Schamberg's Disease
Scheuermann's Kyphosis
Schinzel-Giedion Syndrome (SGS)
Schizencephaly
Schizophrenia*
Sciatica
Scleroderma
Sclerosing Peritonitis (SP)
Scoliosis
Secondary Adrenal insufficiency
Secondary Immune Deficiency (SID)
Sensory Processing Disorder (SPD)
Sepsis
Sexually Transmitted Disease (STD)
Shaken Baby Syndrome (SBS)
Shingles (Herpes Zoster)
Short Bowel Syndrome (SBS, Short Gut)
Shoulder Replacement
Sickle Cell Disease (SCD)*
Sickle Cell Trait (SCT)
Sinusitis
Sjogren's Syndrome (SjS, SS)
Skin Cancer
Sleep Apnea (OSA)
Sleep Disorder
Small for Gestational Age SGA)
Small Intestinal Bacterial Overgrowth (SIBO)
Smith-Lemli-Opitz Syndrome (SLOS)
Sotos Syndrome
Spasmodic Dysphonia
Spastic Diplegia
Spasticity
Speech Impairment
Spherocytosis
Sphincter of Oddi Dysfunction
Spina Bifida (SB)
Spinal Cancer
Spinal Cord
Spinal Muscular Atrophy (SMA)
Sprengel Deformity
Stickler Syndrome
Stiff Person Syndrome (SPS)
Stomach (Gastric) Cancer
Stomach Ulcer
Stroke
Subcortical Band Heterotopia
Subglottic Stenosis (SGS)
Superior Mesenteric Artery Syndrome (SMA) (Wilkie's Syndrome)
Syncope
Synesthesia
Syringomyelia
Tardive Dyskinesia (TD)
Tarlov Cysts
Tay Sachs (TSD)
Temporomandibular joint (TMJ)
Tendonitis
Tenosynovial Giant Cell Tumor (TGCT)
Testicular Cancer
Thalassemia
Thoracic Outlet Syndrome (TOS)
Throat Cancer
Thrombocytopenia (TCP)
Thrombotic Thrombocytopenic Purpura (TTP)
Thyroid Cancer
Thyroid Eye Disease (TED)
Thyroid Nodule
Thyroidectomy
Tics
Tongue Cancer
Tooth Agenesis (Anodontia)
Torticollis (Wry Neck)
Tourette Syndrome (TS)
Townes-Brocks Syndrome
Toxic Synovitis
Tracheobronchomalacia (TBM)
Tracheomalacia
Transient Global Amnesia (TGA)
Traumatic Brain Injury (TBI)
Treacher Collins syndrome (TCS)
Trichotillomania (TTM)
Trigger Finger (Stenosing Tenosynovitis)
Trisomy 13 (Patau Syndrome)
Trisomy 18 (Edwards Syndrome)
Trisomy X (XXX)
Tuberculosis
Ulcerative Colitis (UC)
Undifferentiated Connective Tissue Disease (UCTD)
Urea Cycle Disorder (UCD)
Urethral Prolapse
Urinary Tract Infection (UTI)
Urticaria (Hives)
Usher Syndrome
Uterine Cancer
Uterine Fibroids
Uterine Leiomyosarcoma
Uterine Polyps
Uveitis
VACTERL Syndrome
Vaginismus
Valosin Containing Protein (VCP)
Varicose Veins
Vasculitis
Velopharyngeal Insufficiency (VPI)
Vertebral Artery Dissection (VAD)
Vertigo
Vision Impairment
Vitamin B12 Deficiency
Vitamin D Deficiency
Vitiligo
Vocal Cord Dysfunction (VCD)
Von Hippel-Lindau Syndrome
Von Willebrand Disease (VWD)
Vulvar Cancer
Vulvodynia
Waldenstrom’s Macroglobulinemia (WM, Lymphoplasmacytic Lymphoma)
Wegener's Granulomatosis with Polyangiitis (GPA)
Wheelchair
Williams Syndrome (WS)
Wilson's Disease (hepatolenticular degeneration)
Wolf-Hirschhorn Syndrome (WHS)
Wolff-Parkinson-White (WPW) Syndrome
X-Linked Hypophosphatemia (XLH)
Zoon vulvitis
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.