What's New at Rare Patient Voice?
Study Results
Mental health isn’t a separate issue from physical health in the rare disease community—it directly impacts treatment adherence, clinical trial outcomes, quality of life, and more. A recent paper from Rare Patient Voice presents survey results from 958 rare disease patients and family caregivers on mental health issues, revealing that 82.4% experience frequent emotional distress that interferes with their daily lives.
The research shows that a mental health burden is the norm, not the exception, within the rare disease community. Both patients and caregivers experience similar levels of emotional distress, with anxiety about the future affecting 82.7% of respondents and medical uncertainty causing stress for 75.1%. However, only 30% have accessed professional mental health services, revealing a critical gap between need and support.
Read more in The Critical Need to Address Mental Health in the Rare Disease Community, available for download now from RPV.
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, Shelley!
Partner Corner
PBC Awareness NFP is organized exclusively for charitable, educational, and advocacy purposes within the meaning of Section 501(c)(3) of the Internal Revenue Code. The organization operates as an independent, founder-led nonprofit dedicated to advancing education, awareness, advocacy, research support, patient voice, and health equity for individuals affected by Primary Biliary Cholangitis and related rare liver diseases.
Our goal is to empower patients, caregivers, and healthcare professionals through education, community engagement, advocacy initiatives, and support for research that improves outcomes for those living with PBC. Visit us at: https://pbcawareness.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.
