What's New at Rare Patient Voice?
Survey Results
Have you heard of clinical trial co-design? It’s the process of researchers planning and designing a clinical trial together with patients, caregivers, and other stakeholders to ensure the study is relevant, ethical, and focused on what matters most to the people it affects.
Earlier this year, 2156 U.S. patients were surveyed by Rare Patient Voice on their thoughts regarding taking part in co-design for clinical trials. Almost 80% felt that it was extremely or very important for patients to be involved in the design of clinical trials, and 0 thought it was not important. That is saying a lot!
To read more of the survey findings, visit our Case Studies page on the RPV website.
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, Denise C.!
Partner Corner
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive.
Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status. Visit helphopelive.org.
Staff Spotlight
Amela Zeljo is an American-Bosnian citizen whose background includes marketing, graphic design, and project management. She loves helping people and always tries to maintain a positive attitude everywhere she goes. Amela values her role in supporting patients and family caregivers to be heard by researchers.
“What makes me proud is knowing our work helps people feel seen. Many of our participants have faced years of being overlooked in healthcare conversations, and RPV gives them the platform they’ve long deserved. It’s amazing to play a role in that change.”
In her off hours, Amela enjoys spending time with her cat, Patchi, and playing soccer. In fact, she was at one time a goalkeeper for the Bosnian National Soccer team!
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
Alopecia Areata (AA) patients United States
90-minute web-assisted phone interview, compensation is $150
Alopecia: Alopecia Areata (AA) patients United States
30-minute online survey, compensation is $35
Alpha-Mannosidosis (AM) caregivers United States
Compensation is $125
Alzheimer's Disease (AD): 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
Amyloidosis: ATTR-CM patients United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis 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
Anemia, Coronavirus (COVID-19): Long Hauler, Lupus: Lupus Nephritis (LN), Lupus: Systemic Lupus Erythematosus (SLE) caregivers of patients ages 12-17 and patients ages 16-17 in Connecticut, Illinois, Indiana, New Jersey, New York, Texas, and Wisconsin United States
In-person interviews, compensation is $250 for the caregiver and $350 for the adolescent patient
Atopic Dermatitis (Eczema) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Bile Duct Cancer (Cholangiocarcinoma), Liver Cancer patients and caregivers United States
15-minute online survey, compensation is $30
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 in the Connecticut; Delaware; Maine; Massachusetts; Philadelphia, PA/NJ; New York; Rhode Island areas United States
90-minute in-person interview, compensation is $165
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
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
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
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
Cushing's Syndrome (Hypercortisolism) patients United States
60-minute web-assisted phone interview, compensation is $120
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Desmoid Tumor patients United States
60-minute web-assisted phone interview, compensation is $100
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
Extensive-stage small cell lung cancer (SCLC) patients and caregivers United States
Friedreich's Ataxia (FA) patients United States
Type of interview varies, compensation based on involvement/type of interview
Heart Disease: Cardiomyopathy patients and caregivers United States
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 adult patients & adolescent patient/caregiver duos & caregivers of adults United States
In-person interviews (locations TBD), compensation is $200
Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90
Hepatitis: Hepatitis B (Hep B) patients who are immigrants from Asia, Pacific Islands, or Africa living in the United States
30-minute online survey, compensation is $35
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 and caregivers United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
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
30-minute online survey, compensation is $60
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 and caregivers United States
25-minute online interview, compensation is $50
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $100
Liver Disease (not hepatitis): Biliary Atresia (BA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
20-minute online survey, compensation is $40
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-mintue online survey, compensation is $60
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 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) 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
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
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $250
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) patients 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
Prostate Cancer patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
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) patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
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, compensation is $60
Schizophrenia patients who use Cobenfy and caregivers United States
20-minute online survey, compensation is $40
Scleroderma: Diffuse Systemic Scleroderma, Scleroderma: Limited, Scleroderma: Systemic Scleroderma patients United States
60-minute web-assisted phone interview, compensation is $125
Sjogren's Syndrome (SjS, SS) male patients United States
60-minute web-assisted phone interview, compensation is $120
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
Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
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
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
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
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.
