Rare Disease Congressional Caucus Briefings

Nicholas Manetto gave a presentation to the Rare Disease Congressional Caucus, discussing the experiences of patients living with rare diseases and explaining how those experiences can influence policy. Congressional caucuses include members of the U.S. House of Representatives and the U.S. Senate that meet in pursuit of common legislative goals. This presentation to the Rare Disease Congressional Caucus, co-chaired by Representatives Gus Bilirakis and Doris Matsui and Senators Amy Klobuchar and Roger Wicker, provided an opportunity to advocate for rare disease patients to the elected representatives able to make a difference legislatively.