Since the passage of the Orphan Disease Act in 1983, significant progress has been made in treating rare diseases. Two things have made an impact: 1) the increased role that patients and caregivers have taken in clinical research; and, 2) the rise of first-person voices surfaced through more actionable market research.

While working in market research, President and Founder of Rare Patient Voice, Wes Michael, was inspired by seeing companies become more and more interested in getting community opinions, not just physician opinions. He started RarePatient Voice in 2013 to give more people with rare diseases the opportunity to voice their opinions through surveys and interviews in order to improve medical products and services. “Who knows more about what people with rare diseases need and want than those in the community?” says Michael.



He started Rare Patient Voice in 2013 to give more patients with rare diseases the opportunity to voice their opinions through surveys and interviews to improve medical products and services.


Join the 20,000+ people living with a rare condition (and caregivers) at Rare Patient Voice and share your opinions through surveys and interviews. Learn more.