RPV Featured in Rare Revolution Magazine, Autumn 2026
Some conferences can truly make a lasting impression. Our Patient Advocacy Director Jennifer Messier attends many each year on behalf of RPV, but the 2026 NFXF International Fragile X Conference … READ MORE
RPV President Wes Michael is an Insight250 Honoree
For the second year in a row, Rare Patient Voice President and Founder Wes Michael has been honored with an Insight250 award, sponsored by the insights industry association ESOMAR.
RPV Survey Referenced in PharmaVoice Article on Rare Disease R&D
In 2025, RPV surveyed 2156 patients in the United States for their thoughts on participating in co-design for clinical trials. On Sept. 16, noted industry media outlet PharmaVoice referenced the … READ MORE
Wes Michael Talks Helping Give Patients a Voice on The Teaching Journeys
Dave Roberts, MSW lost his 18-year-old daughter Jeannine due to a rare form of cancer, alveolar rhabdomyosarcoma, and was later inspired to create The Teaching Journeys Podcast. In this thought-provoking … READ MORE
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