By Julia Jenkins, EveryLife Foundation Director of Government Relations
We are very excited to share the news that rare disease Accelerated Approval language made it into the House draft PDUFA bill. The language that incorporates the goals of ULTRA is the only mention of rare diseases in the entire 205-page bill. This is a huge accomplishment for the rare disease community and is a major step toward spurring the development of lifesaving treatments. While there is still work to be done, and it is too soon to pop open the champagne, I will take a few moments to tell the story of how a few parent activists ignited the grassroots patient community to influence the legislative process.