The idea began, as most ideas do, simply enough. A group of five friends would do a 6-day bike ride along a 350-mile established Rails to Trails route from Pittsburgh, PA to Washington, DC. However, the plans for an informal ride morphed quickly into an organized, national awareness campaign involving more than ten different rare disease groups from the Coalition of Patient Advocacy Groups (CPAG) organization.
Although the event was sponsored by the Vasculitis Foundation and the Vasculitis Clinical Research Consortium (VCRC), we reached out to other rare disease groups for their participation.Although initially, there were Instead of only five riders, we now had 14.
Joyce Kullman, Executive Director of the Vasculitis Foundation (VF) and I, put the word out at a CPAG meeting and through conference calls that we were looking for other groups to join in our effort to increase awareness of the need for more research into all rare diseases. Moreover, we wanted to raise awareness in the media, and on Capitol Hill about the vital role CPAG plays in rare disease research.
Our first objective was to solicit comments from patients, doctors, and researchers from the participating CPAG organizations. In the end we gathered more than 300 signatures/comments and compiled them all into a book entitled, "A Call to Action: the Impact of Rare Diseases on Patients and Caregivers".
We then decided to make the bike ride itself a symbolic adventure. We rode 350 miles over six days into the heart of Washington D.C. where we handed this book over to a group of Congressional and Senate representatives near the Capitol. Moreover, representatives from the NIH welcomed us at the end of our ride.
Initially, there was some understandable skepticism about how many CPAG organizations would participate in an event sponsored by another rare disease group, not affiliated directly with their disease of interest. Each consortium and its corresponding patient advocacy organizations are all competing in a saturated media marketplace for recognition. Moreover, the challenge was to promote research into all rare diseases, but to still promote the needs of the sponsoring organization—the Vasculitis Foundation. I think we met this challenge and ultimately exceeded the expectations of everyone.
Our VF Ride for Rare Diseases is a model of how the spotlight can remain on one primary group, while providing enough "exposure" to bring other organizations into the big picture.
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By Ed Becker
Director, Polyarteritis Nodosa Support Network