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 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 Interviewed in Leadership Today Blog
Adam Mendler is a nationally recognized authority on leadership and is the creator and host of Thirty Minute Mentors, where he regularly elicits insights from America’s top CEOs, founders, athletes, … READ MORE
Lessons Learned on MR Fraud – New Article by Wes Michael in Greenbook
Fraud in research is real and growing, but it doesn’t have to be overwhelming. With vigilance, thoughtful sourcing, and transparency, preserving the integrity of our insights can be a reality. … READ MORE
Read About Overcoming Challenges to Engaging Rare Patients in Clinical Research
Clinical research is key to medical progress, providing the data necessary to develop new treatments, improve outcomes, and offer hope to patients. Nowhere is this hope more urgently needed than … READ MORE
