What's New at Rare Patient Voice?
Study Results
Improving participation in clinical research requires an understanding of current patient preferences, needs, and barriers. Rare Patient Voice – a Konovo Company recently conducted a survey of 1,000 patients to better understand their opinions on clinical trial participation.
94% of patients say they would be more likely to participate in a clinical trial if it could be conducted largely from home, with telemedicine visits and local lab or imaging options. When 85% of clinical trials face delays due to enrollment and retention challenges, it raises an important question: Why aren't patients and families being offered more flexibility? The data is hard to ignore.
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, Shaddai!
Partner Corner
The Perpetual Caregiver exists to bring Relief, Resources, and Renewal to caregivers, families, and individuals navigating chronic illness. Through advocacy, education, trusted partnerships, and compassionate support, we help people move from survival to stability, resilience, and hope—ensuring that no caregiver walks the journey alone. Visit us at https://www.theperpetualcaregiver.com/
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! The list of studies we are working to fill immediately 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 complete this survey: https://rpv.q-one.tech/survey/2GxFnE077k1W
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!
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.
