What's New at Rare Patient Voice?
Study Results
The source providing information can make all the difference in terms of trust and value. In a Rare Patient Voice study, 1,147 patients and caregivers in the U.S. were surveyed about their communication preferences regarding clinical trials. When asked about the resources they trusted most for clinical trial information, healthcare providers were the most cited, with hospitals/clinics and patient advocacy groups tied for second place.
Your Time Is Valued, Even If You Didn’t Qualify
Your time is valued, whether you qualify for a study or not. Each month we automatically enter those who tried but did not qualify for a study into a drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Cody!
Partner Corner
The Macular Degeneration Association (MDA) is dedicated to advancing research and providing education that empowers individuals affected by macular degeneration and other vision-related diseases. Our mission is to fund innovative research while delivering valuable resources and support to patients, families, and caregivers. MDA fulfills this mission through research funding, educational conferences, public awareness initiatives, scientific publications, advocacy efforts, virtual programming, online educational resources, a quarterly newsletter, and a comprehensive website designed to keep the vision community informed and connected.
Visit us at www.macularhope.org.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! The list of studies we are working to fill can be found at https://rarepatientvoice.com/patients/study-opportunities/.
1. If you are already a member of the Rare Patient Voice community and would like to be considered for an open study, please email study.inquiries@rarepatientvoice.com with the name of the study you are interested in.
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.
Please feel free to share this page with friends or family who might be interested!
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 $18 million dollars since 2013 for participating in research studies.
