More than 900 patients and families from across the country attended Rare Disease Week on Capitol Hill 2020 from February 25th – 28th, an annual event hosted by the Rare Disease Legislative Advocates (RDLA). The Week featured events designed to educate and activate advocates and to foster relationships within the community. Advocates representing 227 patient organizations participated in 393 meetings with Members of Congress in one day.
“This year was by far our biggest Rare Disease Week on Capitol Hill. The event has grown each year since it started in 2012,” said EveryLife Foundation for Rare Diseases Executive Director Julia Jenkins. “We are witnessing a surge of engagement from the rare disease community. These advocates are energized and are demanding more treatment and diagnostic opportunities. They know it’s possible, and they can’t afford to wait.”
Thanks to their efforts, at least nine Members of Congress joined the Rare Disease Congressional Caucus, including: Rep. Emanuel Cleaver (MO-5), Rep. Antonio R. Delgado (NY-19), Senator Charles Grassley (IA), Rep. Dusty Johnson (SD-AL), Senator Doug Jones (D-AL), Rep. Bob Latta (OH-5), Rep. Ted Lieu (CA-33), Rep. Ralph Norman (SC-5), and Rep. Martha Roby (AL-2). These new Members bring the number of Rare Disease Congressional Caucus members to 170. In addition, various pieces of legislation impacting the community received increased support.
One in 10 Americans suffers from one of 7,000 known rare diseases. A disease is defined as rare when it affects fewer than 200,000. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children.
The RDLA is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.