What's New at Rare Patient Voice?
Survey Results
Motivation to take part in research can be for a number of reasons, depending on the individual. Interestingly, according to an RPV survey, patients cited wanting to help with research for the development of future treatments and cures for future patients. Read more about patient preferences on taking part in healthcare market research and clinical trials here.
Your Time Is Valued, Even If You Didn’t Qualify
We always appreciate your time and being part of the RPV community, even if you didn't qualify for a particular study. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Joseph Z.!
Partner Corner
The Friends of the PBC Foundation's mission is to improve the lives of the 130,000+ Americans diagnosed with Primary Biliary Cholangitis (PBC) through comprehensive support, education, and advocacy.
September is PBC Awareness Month!
Sunday, September 14, 2025 is International PBC Awareness Day. The U.S. PBC Patient Conference will take place Friday, September 19-21st at the Marriott Marquis Chicago. For more information and to register, click here.
Staff Spotlight
Laurie Cotumaccio is an experienced marketing professional, publicist, and events planner. She began her career in television production, booking guests for several national daytime shows, and also spent ten years in publicity at publisher Simon & Schuster. At Rare Patient Voice, Laurie’s focus is seeking out, pitching, and arranging interviews for RPV’s leadership for discussions ranging from the healthcare landscape, rare disease issues, and the patient voice to market research and entrepreneurship.
"I am so proud to work for an organization that empowers patients and family caregivers to share their voices with researchers developing new products, devices, and treatments. My role at Rare Patient Voice allows me to support our mission of making sure people feel seen and heard".
A lifelong New Yorker, Laurie and her family recently relocated to Pittsburgh, PA for a new adventure. She is enjoying her time in "The Burgh" and exploring new neighborhoods with her Golden Retriever, Sadie.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com
2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who might be interested!
United States
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform and up to $90 per year for caregivers who complete brief surveys about their child's health
Acromegaly patients United States
90-minute web-assisted phone interview plus a 15-minute pre-read assignment, compensation is $180 for the interview and $30 for the pre-read assignment
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Alopecia Areata (AA) patients United States
90-minute web-assisted phone interview, compensation is $150
Alzheimer's Disease (AD) patients over age 65 and caregivers ages 25-64 United States
30-minute web-assisted phone interview, compensation is $60
Alzheimer's Disease (AD), Heart Disease patients Indianapolis, IN United States
1 day in-person event , compensation is $125 per hour
Amyloidosis: ATTR-CM or ATTR-PN patients United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis: ATTR-CM patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer: Muscle-Invasive Bladder Cancer (MIBC) patients United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $100 for the interview and $80 for confirmation of diagnosis (paid via egift card)
Bladder Cancer patients United States
20-minute online survey, compensation is $40
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Breast Cancer (BC): Metastatic patients United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC) patients United States
30-minute web-assisted phone interview, compensation is $60
Breast Cancer (BC) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Breast Cancer (BC) patients ages 18-65 diagnosed within the last few years United States
15 minute online survey, compensation is $40
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $150
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Cardiovascular Disease, High Blood Pressure (Hypertension, HBP), Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150
Cervical Cancer, Endometrial Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Stomach (Gastric) Cancer patients United States
45-minute web-assisted phone interview, compensation is $150
Chronic Idiopathic Urticaria (CIU), Chronic Spontaneous Urticaria (CSU) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities,c compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
medical record service sign up, compensation is $75 for the initial signup
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Crohn's Disease (CD), Microscopic Colitis, Ulcerative Colitis (UC) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $210
Cushing's Syndrome (Hypercortisolism) patients and caregivers United States
60-minute web-cam interview with an optional 30-40 minute prework assignment, compensation is $120 for the interview and $75 for the prework assignment
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Cutaneous Lupus Erythematosus (CLE) patients United States
70-min Virtual Ethnography via Recollective + 60-min Follow Up Interview via Zoom, Compensation is $140 for the Virtual Ethnography and $120 for the follow-up interview
Dementia caregivers United States
90-minute web-assisted phone interview plus a 60-minute follow-up web-assisted phone interview (confirmation of diagnosis required), compensation is $160 for the initial interview + $110 for the follow-up interview + $50 for confirmation of diagnosis
Desmoid Tumor male patients United States
60-minute web-assisted phone interview, compensation is $100
Diabetes (DM): Type 2, Obesity Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150
Dwarfism: Achondroplasia caregivers United States
30-minute online survey, compensation is $60
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120
Epilepsy: Focal Seizures (Partial Seizures) patients and caregivers of pediatric patients (ages 1-17) who have taken Briviact United States
30-minute online survey, compensation is $60
Extensive-stage small cell lung cancer (SCLC) patients and caregivers United States
Heart Disease: Cardiomyopathy patients and caregivers United States
Heart Disease, High Cholesterol (Hyperlipidemia) Asian, Native Hawaiian, Pacific Islander, African American, Hispanic/Latino patients United States
90-minute focus group, compensation is a $150 electronic Amazon gift card
Heart Disease: Pericarditis patients United States
30-minute online survey, compensation is $105
Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Hemophilia A patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Hemophilia B caregivers of patients born in 2007 or later United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90
Hepatitis: Hepatitis C (Hep C) Non-Caucasian male or female patients ages 18-55 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hepatitis: Hepatitis C (Hep C) patients United States
20-minute online survey, compensation is $40
HER2 Positive Cancer patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Human Growth Hormone Deficiency (GHD), Muscle-Wasting Disease, Short Bowel Syndrome (SBS, Short Gut) patients in Chicago and Schaumburg, IL United States
60-minute in-person interview, compensation is $150
Huntington's Disease (HD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Hypophosphatasia (HPP) caregivers United States
Hypophosphatasia (HPP), Rickets (Osteomalacia), X-Linked Hypophosphatemia (XLH) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Immune Thrombocytopenic Purpura (ITP) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients currently using Tyvaso DPI and caregivers United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
Kidney Disease: IgA Nephropathy (Berger's Disease) patients ages 18-64 in California, Connecticut, Florida, Illinois, Indiana, New Jersey, New York, Texas, Wisconsin United States
60-minute web-assisted phone interview, compensation is $250
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $100
Leukemia: Chronic Myeloid (Myelogenous) Leukemia (CML) patients United States
30-minute online survey, compensation is $60
Liver Disease (not hepatitis): Biliary Atresia (BA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Liver Disease (not hepatitis): NASH/MASH Hispanic or Latino/Latina patients fluent in Spanish United States
75-minute web-assisted phone interview, compensation is $150
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
20-minute online survey, compensation is $40
Lupus: Lupus Nephritis (LN) non-caucasian, non-hispanic female patients United States
30-minute online survey, compensation is $60
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-minute online survey, compensation is $60
Macular Degeneration: Geographic Atrophy patients ages 50+ and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma (MM) patients United States
20-minute online survey, compensation is $40
Multiple Myeloma (MM) patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Multiple Myeloma (MM) patients and caregivers United States
30-minute online survey, compensation is $60
Multiple Myeloma (MM) patients and caregivers United States
15-minute online survey, compensation is $30
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
20-minute online survey, compensation is $40
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers United States
25-minute online survey, compensation is $50
Multiple System Atrophy (MSA) patients and caregivers United States
60-minute web-assisted phone interview and 40-minute pre-work assignment, compensation is $200
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) caregivers United States
60-minute web-assited phone interview, compensation is $120
Myasthenia Gravis (MG), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) caregivers of pediatric patients United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients and caregivers in Denver, CO; Tampa, FL; Orlando, FL; Chicago, IL; Charlotte, NC; Raleigh, NC; Manhattan, NY; Cincinnati, OH; Columbus, OH United States
60-minute in-person interview, compensation is $180
Myelofibrosis (MF) patients United States
25-minute online survey, compensation is$50
Neuroendocrine Cancer (NET): Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Non-Clear Cell Renal Cell Carcinoma (Kidney Cancer, RCC) patients United States
60-minute web-assisted phone interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL), Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
30-minute online survey, compensation is $60
Obesity patients United States
2 hour in-person event in New York City on 7/21/2025, compensation is $360
Osteoporosis Hispanic patients ages 55 and older United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Phenylketonuria (PKU) disengaged patients not currently taking pharmaceutical treatments or who have not seen a metabolic specialist or healthcare provider in the past year United States
60-minute online survey, compensation is $120
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Primary Immunodeficiency: Activated PI3K-Delta Syndrome (APDS) patients United States
60-minute web-assisted phone interview, compensation is $125
Prostate Cancer patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Prostate Cancer patients ages 45+ United States
15-minute online survey, compensation is $30
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
Psoriasis (PsO), Psoriatic Arthritis (PsA) patients United States
30-minute online survey, compensation is $60
Psoriasis (PsO), Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview, compensation is $120
Psoriasis (PSO), Psoriatic Arthritis (PsA) non-caucasian patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Pulmonary Arterial Hypertension (PAH) male patients taking Tyvaso DPI United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity
Rheumatoid Arthritis (RA) patients United States
30-minute online survey, compensation is $50
Rheumatoid Arthritis (RA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Schizophrenia patients United States
30-minute online survey plus a 60-minute follow-up interview, compensation is $60 for the survey and $120 for the follow-up interview
Schizophrenia patients United States
30-minute online survey, compensation is $60
Scleroderma: Diffuse Systemic Scleroderma, Scleroderma: Limited, Scleroderma: Systemic Scleroderma patients United States
60-minute web-assisted phone interview, compensation is $125
Scleroderma, Systemic Sclerosis (SSc) patients United States
45-minute web-assisted phone interview, compensation is $100
Sickle Cell Disease (SCD) caregivers United States
30-minute online survey, compensation is $60
Sjogren's Syndrome (SjS, SS) male patients United States
60-minute web-assisted phone interview, compensation is $120
Spinal Muscular Atrophy (SMA) patients United States
75-minute survey plus a follow-up survey, compensation is $125 for the initial survey and $25 for the follow-up survey
Stomach (Gastric) Cancer patients and caregivers United States
30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview
Thyroid Eye Disease (TED) female patients United States
30-minute online survey, compensation is $60
Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Urticaria (Hives) patients and caregivers United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Vasculitis patients United States
60-minute web-assisted phone interview, compensation is $120
Vision Impairment: Retinitis Pigmentosa patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Vitiligo patients ages 18-71 United States
20-minute online survey, compensation is $40
Canada
Amyloidosis: ATTR-CM patients Canada
60-minute web-assisted phone interview, compensation is $160 CAD
United Kingdom
Amyloidosis: ATTR-CM patients United Kingdom
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Epidermolysis Bullosa (EB): Recessive Dystrophic Epidermolysis Bullosa patient advocacy groups (PAG's) United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Esophageal Cancer, Stomach (Gastric) Cancer, patients and caregivers United Kingdom
120-minute online bulletin board plus a 75-minute follow-up web-assisted phone interview for patients or a 90-minute web-assisted follow-up phone interview for patient/caregiver duo, compensation is 140 GBP for the online bulletin board, 88 GBP for the patient follow-up interview, and 105 GBP for the patient/caregiver follow-up interview
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Hereditary Angioedema (HAE) patients United Kingdom
45-minute web-assisted phone interview or 30-minute online survey, compensation is 70 GBP for the interview and 50 GBP for the survey
Myopathy, Thyroid Eye Disease (TED) patients United Kingdom
60-minute web-assisted phone interview, compensation is 120 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Prostate Cancer patients patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
France
Amyloidosis: ATTR-CM patients France
Esophageal Cancer, Stomach (Gastric) Cancer patients and caregivers France
120-minute online bulletin board plus a 75-minute web-assisted follow-up phone interview for patients, compensation is 120 EUROS for the online bulletin board and 75 EUROS for the patient follow-up interview
Germany
Myopathy, Thyroid Eye Disease (TED) patients Germany
60-minute web-assisted phone interview, compensation is 80 Euros
Italy
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Prostate Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $120 (typically) per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $15 million dollars since 2013 for participating in research studies.
