Skip to main content
Front of the Capitol building

Rep. Issa Re-Joins Rare Disease Congressional Caucus

August 13, 2021

Rep. Issa announced recently that he has re-joined the Rare Disease Congressional Caucus, a bipartisan and bicameral group led by Representatives G. K. Butterfield (D-NC) and Gus Bilirakis (R-FL) and Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) to promote awareness of rare disease issues.  Rep. Issa was previously a member of the organization and joined again after returning for the 117th session of Congress.

The Congressman was encouraged to re-join the group after recently meeting with the Perko family, residents of the 50th Congressional District, who were inspired by their own personal experiences to become advocates for rare diseases.  

There are over 7,000 rare disorders that together affect more than 30 million Americans and their families. Rare or orphan diseases are defined as diseases affecting fewer than 200,000 people in the United States. Many rare diseases are considered ultra-rare; some affect fewer than 100 people. Rare diseases include genetic diseases, rare cancers, tropical or neglected diseases, and many pediatric diseases. Many of these diseases are life-threatening and have no treatment options.

The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address barriers to the development of and access to life-altering treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Working together we can find solutions that transform hope into therapies and cures.

Read more about this organization here