The Rare Disease Legislative Advocates (RDLA) program provides an opportunity for rare disease patients and advocates to share their information with policy makers and political leaders. They do this in a number of ways, including the scheduling of regular bipartisan Caucuses and hosting Rare Disease Week events in Washington DC.
Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases explains how RDLA empowers patients to have the knowledge and the tools to speak for themselves.
To that end, RDLA hosts monthly meetings that are held at their office in D.C. (The Rare Hub) which are also broadcasted live online. These webinars provide “an opportunity for anybody in the rare disease community, or anybody who wants to speak to the rare disease community, to come and join the webinar.”
RDLA also makes sure that both political parties are informed about the concerns of the rare disease community. They have a bipartisan Rare Disease Caucus, led by Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS) and Congressmen Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC), that meets regularly. Hartman noted they just finished a Caucus meeting in May and have one planned in September to talk about newborn screening.
One of the most visible events that the RDLA hosts is the Rare Disease Week activities that are held the last week of February. “We had over 800 advocates come to Washington to participate in events during that week. Our Lobby day itself had over 300 Hill visits, and we’re hoping that next year, we can hit every member of Congress,” stated Hartman.
To learn more about the many activities RDLA is involved with go to www.rareadvocates.org