What's New at Rare Patient Voice?
Study Results
According to a survey conducted by RPV on behalf of RARE Revolution Magazine and featured in their spring 2024 issue: Women in RARE, feeling overwhelmed is very common for women living with rare disease. The survey captured insights from over 1,000 women, 80% USA and 20 UK participants.
Didn’t Qualify for a Study? We Still Value Your Time
We appreciate your participation 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, Kelly!
Partner Corner
Cystic Fibrosis Research Institute (CFRI) Mission: To be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support. CFRI Vision: To find a cure for cystic fibrosis while enhancing quality of life for the CF community. For more information, visit us at: https://www.cfri.org/
Referrals
Would you be interested in becoming a valued referral partner by promoting Rare Patient Voice and encouraging others to participate in research? As a referral partner, you play a pivotal role in recruiting patients and family caregivers to participate in all types of research studies. For each successful referral who signs up through your referral link, you will be eligible to receive compensation of $10 USD. Click here for more information and to sign up to be an RPV referral partner.
Staff Spotlight
After earning a BA in Business Administration and a BA in Economics from Towson University, David Minion joined Rare Patient Voice in 2014. As Senior Project and Information Security Manager, he works directly with clients and patients to ensure studies run smoothly and effectively for both the patients and our clients. He has also helped RPV to obtain ISO certification. David is an active member of the Little People community through Little People of America (LPA) and the Dwarf Athletic Association of America (DAAA). Being “rare” himself, he brings a unique perspective to the Rare Patient Voice team and feels strongly about helping others to share their voices.
“I’m most proud of being able to help give groups of people who have in the past been marginalized and discriminated against the opportunity to finally have their opinions really heard.”
A big Philadelphia sports fan, when not cheering for the Flyers and the Eagles, David loves reading, watching Netflix, and spending time with his pup, Willow. He’s a bit of an athlete himself, having earned a gold medal with Team USA at the World Dwarf Games.
Free Webinar Highlighting Rare Disease Caregivers
Join us for this live webinar, featuring a panel including RPV’s President, Wes Michael, and rare disease caregivers and a patient as they discuss how the lives of those caring for loved ones living with rare diseases are affected. The results of a recent RPV study will be part of the discussion. Click here to register: https://us02web.zoom.us/webinar/register/WN_OrZ-o9AvQOSgRpuVZ-nCmg#/registration
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 adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Alcohol-Related Liver Disease (ARLD), Metabolic Dysfunction-Associated Steatohepatitis Liver Disease(MASH), Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), Non-Alcoholic Fatty Liver Disease (NAFLD), Non-Alcoholic Steatohepatitis Liver Disease (NASH) patients United States
6-month online community study, compensation is $15 per activtiy (5 to 60 minutes each)
Alopecia, Asthma, or Celiac Disease patients and caregivers of patients ages 12-17 United States
45-minute web-assisted phone interview, compensation is $90
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
Choice of 120-minute in-home interview on 5/29 or morning of 5/30 (must live within 75 minutes of Philadelphia) or 60-minute web-assisted phone interview or 120-minute online focus group
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Catheter User patients in the Philadelphia, PA area United States
90-minute in-person interview, compensation is $270
Chronic Myeloid (Myelogenous) Leukemia patients United States
30-minute online survey, compensation is $60
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Cold Agglutinin Disease (CAD), Thrombotic Thrombocytopenic Purpura (TTP) patients United States
5-minute online survey, compensation is $15
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 Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Dedifferentiated Liposarcoma (DDLPS), Non-Small Cell Lung Cancer (NSCLC) (HER2) patients United States
60-minute web-assisted phone interview, compensation is $120
Duchenne Muscular Dystrophy (DMD) caregivers United States
20-minutes online survey, compensation is a $75 e-gift card
Duchenne Muscular Dystrophy (DMD) caregivers of ages 1-10 United States
60-minute web-assisted phone interview, compensation is $120
Feeding Tube patients ages 18+ or caregivers of ages 1-17 United States
10-minute online survey, compensation is $25
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Friedreich Ataxia (FA) patients United States
60-minute web-assisted phone interview, compensation is $120
Friedreich's Ataxia (FA) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Gastric Cancer, Stomach Cancer, or Vitiligo patients United States
90-minute focus group, compensation is $150
Genital Herpes patients United States
30-minute online survey, compensation is $60
Graves Disease patients United States
30-minute online survey, compensation is $60
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Noonan Syndrome (NS), Small for Gestational Age (SGA), Turner syndrome (TS) caregivers of children in Arizona, California, Florida, or Illinois United States
60-minute in-person interview, compensation is $225
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hemophilia A patients or caregivers United States
60-minute web-assisted phone interview, compensation is $100
Hemophilia A & B patients and caregivers United States
2-hour web-assisted phone interview, compensation is $425
Hodgkins Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgA Nephropathy patients currently taking Tarpeyo United States
60-minute web-assisted phone interview, compensation is $120
Infertility patients United States
60-minute web-assisted phone interview, compensation is $120
Interstitial Lung Disease (ILD) or Pulmonary Fibrosis (PF) male patients United States
Two 60-minute web-assisted phone interviews plus confirmation of diagnosis, compensation is $95 per interview and $50 for confirmation of diagnosis
Kidney Disease: Complement-3 Glomerulopathy patients and caregivers United States
60-web-assisted phone interview, compensation is $120
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Macular Degeneration: Wet or Dry patients ages 50-79 United States
Online bulletin board up to 90-minutes, compensation is $180
Multiple Myeloma patients United States
20-minute online survey, compensation is $40
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Myelofibrosis patients and caregivers United States
30-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $150
Non-Small Cell Lung Cancer (NSCLC) patients ages 35+ diagnosed within the last 3 years United States
70-minute web-assisted phone interview plus a prework assignment, compensation is $120 for the interview and $20 for the prework assignment
Non-Small Cell Lung Cancer (NSCLC) patients or caregivers United States
60-minute web-assisted phone interview, compensation is $125
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
25-minute online survey, compensation is $55
Phenylketonuria caregivers of adolescent children ages 12-17 United States
Online survey-up to 60 minutes, compensation is $65
Pulmonary Arterial Hypertension (PAH) patients United States
40-minute online survey, compensation is $80
Pyruvate Kinase Deficiency caregivers of patients ages 8-17 United States
60-minute web-assisted phone interview (patients answer questions, caregivers will present), compensation is $190
Rheumatoid Arthritis or 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
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Vasculitis patients United States
60-minute online survey, compensation is $125
Vasculitis: Microscopic Polyangiitis (MPA) patients United States
120-minute focus group, compensation is $240
United Kingdom
Hemophilia A & B patients and caregivers United Kingdom
30-minute online survey, compensation is 50 GBP
Canada
Addiction male patients Canada
90-minute web-assisted phone interview, compensation is 200 CAD
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 per hour (typically) 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 $13 million dollars since 2013 for participating in research studies.
