The IgAN Foundation is showing its stripes for Rare Disease Week. Please check out our frame on Facebook & use it on your profile picture to show your stripes!
The Foundation attended the Rare Disease Caucus in Washington, D.C. on Tuesday, February 25. We learned about the bills currently in Congress benefiting rare disease. Some of the current asks of Congress are:
- support increased funding for Orphan Products Clinical Trial Grants program
- enact the Newborn Screening Saves Lives Reauthorization Act
- support the creation of a Rare Disease Center of Excellence at the FDA.
Eric Dube, CEO of Retrophin, was there to introduce Representative Gus Bilirakis, Co-Chair of the Rare Disease Caucus. It was great catching up with our friends at Retrophin, the International Cystinuria Foundation & NephCure.