What's New at Rare Patient Voice?
Survey Results
Patient participation in clinical trials is a key step on the road to developing new treatments, medications, and improving quality of life for patients. How aware are you of opportunities to potentially take part in clinical trials?
In 2024, RPV surveyed 1,147 patients in the United States about their preferences in learning about clinical trials. Only 36% described themselves as “very aware” of clinical trials, with 57% somewhat aware, and 7% not aware at all. Greater knowledge of opportunities to take part in research could lead to more impactful studies and greater overall progress towards cures.
The RPV report on patient preferences in communication on clinical research in its entirety is available to download 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, Brittany M!
Partner Corner
We are a 501c3 non-profit organization made up of parents of children with organic acidemia metabolic disorders. Organic Acidemias are a group of inheritable genetic metabolic disorders in which there is a defect in protein metabolism where an essential enzyme is absent or malfunctioning.
Our mission is to empower families and health care professionals with knowledge in these disorders. We support early intervention through expanded newborn screening, solicit contributions, and distribute funding that supports research toward improved treatment, and eventual cures in the areas of Organic Acid disorders. Visit us at http://www.oaanews.org.
Staff Spotlight
Mirza Rakovac joined Rare Patient Voice in May 2024 as a Helpdesk Specialist, where he plays a key role in assisting respondents by answering their questions about studies, payments, and more in a timely and informative manner.
After studying Management at the Faculty of Business and Administration at the International University of Sarajevo, Mirza recently graduated with a BA. Active in his community, he volunteers by teaching English at a local church, supporting grassroots campaigns for environmental preservation, and organizing creative upcycling workshops for youth as part of his small business.
“I’m proud to work at RPV because I have the opportunity to assist patients directly and address their concerns firsthand. Additionally, I love working with my colleagues, who foster a supportive and collaborative environment.”
When not working or studying, Mirza enjoys arts and crafts, swimming, travel, listening to music and discovering new artists and musical styles.
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
Alopecia Areata, Vitiligo patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alpha-Mannosidosis (AM) caregivers United States
Compensation is $125
Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy (MD): Becker Muscular Dystrophy (BMD), Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD), Muscular Dystrophy (MD): Facioscapulohumeral Muscular Dystrophy (FSH) patient advocacy groups United States
60-minute zoom interview, compensation is $240
Anemia, Coronavirus (COVID-19): Long Hauler, Lupus: Lupus Nephritis (LN), Lupus: Systemic Lupus Erythematosus (SLE) caregivers of patients ages 10-17 United States
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 10-minute homework assignment, compensation is $145
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) patients United States
Chronic/Acute Wound patients ages 35+ United States
15-minute online survey, compensation is $50
Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), Primary Immunodeficiency (PIDD) patients in New Jersey, New York, Pennsylvania United States
60-minute in-person interview
Chronic Obstructive Pulmonary Disease (COPD) patients who use single Inhaler medications United States
60-minute web-assisted phone interview, compensation is $125
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
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
Cushing's Syndrome (Hypercortisolism) patients United States
30-minute online survey, compensation is $60
Diffuse Large B-Cell Lymphoma (DLBCL) patients and caregivers United States
10-minute online survey, compensation is $25
Dravet Syndrome caregivers United States
Eczema (Atopic Dermatitis) caregivers United States
15-minute online survey, compensation is $30
Eczema (Atopic Dermatitis) caregivers of patients ages 2-13 United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Fragile X Syndrome (FXS) caregivers United States
30-minute online survey, compensation is $60
Friedreich's Ataxia (FA) patients United States
Type of interview varies, compensation based on involvement/type of interview
Gaucher Disease (GD), Hereditary Angioedema patients ages 18-79 and caregivers United States
20-minute online survey, compensation is $40
Gaucher Disease (GD): Type 3 patients and caregivers United States
60-minute web-assisted phone interview plus a 30-minute pre-work assignment, compensation is $120 for the interview and $30 for the pre-work assignment
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Head & Neck Cancer patients United States
60-minute focus group, compensation is $120
Heart Disease: Arrhythmia patients excluding states ME, VT, WV United States
25-minute online survey, compensation is $50
Heart Disease, High Cholesterol Asian or Hispanic patients United States
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
120-minute web-assisted phone interview, compensation is $120
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients and caregivers United States
30-minute online survey, compensation is $60
Hemophilia A patient under age 70 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Hemophilia patients and caregivers United States
30-minute online survey, compensation is $60
Hepatitis: Hepatitis C (Hep C) Non-Caucasian male 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
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Immune Thrombocytopenic Purpura (ITP) patients United States
10-minute online survey, compensation is $25
Immune Thrombocytopenic Purpura (ITP) patients United States
5-10 minute in-person recording of doctor visit, compensation is $150
Kidney Disease: Chronic Kidney Disease (CKD), Kidney Disease: Complement-3 Glomerulopathy, Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS), Kidney Disease: Glomerulonephritis, Kidney Disease: IgA Nephropathy (Berger's Disease), Lipoid Nephrosis (Minimal Change Disease), Kidney Disease: Nephrotic Syndrome caregivers of patients ages 10-17 United States
Liposarcoma patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute virtual interview via Google Meet, compensation is $175
Lung Cancer: Non -Small Cell Lung Cancer (NSCLC) patients and caregivers United States
40-minute online survey, compensation is $80
Muscular Dystrophy (MD): Myotonic Muscular Dystrophy (MMD) patients and caregivers United States
60-minute web-assisted phone interview (patiet or caregiver) or 75-minute web-assisted interview (patient and caregiver), compensation is $120 for the 60-minute interview (patient or caregiver) and $150 for the 75-minute interview (patient and caregiver)
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
Myelofibrosis (MF) patients United States
25-minute online survey, compensation is $50
Myelofibrosis patients United States
Year long advisory boards (4 sessions), compensation is $150
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Obstructive Hypertrophic Cardiomyopathy (oHCM) patients and caregivers United States
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
Parkinson's Disease (PD) patients and caregivers United States
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 and caregivers United States
60-minute web-assisted phone interview, compensation is $60
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Progressive Multifocal Leukoencephalopathy patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients United States
30-minute online survey, compensation is $60
Prostate Cancer patients ages 40-80 and caregivers United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $25 for the homework
Prostate Cancer patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients United States
30-minute online survey, compensation is $60
Severe Asthma patients United States
60-minute web-assisted phone interview, compensation is $120
Stomach (Gastric) Cancer caregivers United States
45-minute web-assisted phone interview, compensation is $90
Unresectable Hepatocellular Carcinoma (uHCC) patients United States
90-minute web-assisted phone interview, compensation is $150
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
Warm Autoimmune Hemolytic Anemia (WAIHA) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Vision Impairment: Retinitis Pigmentosa patients United States
60-minute web-assisted phone interview, compensation is $120
Canada
Obesity patients Canada
180-minute in-person interview in Magog, Quebec from 3/31/2025-4/11/2025 plus a follow up interview, compensation is $720 CAD/$540 USD
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
United Kingdom
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Germany
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
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.
