There are more than 7,000 rare disorders that together affect over 25 million Americans and their families 95% of these diseases are without an approved treatment Since the Orphan Drug Act was enacted in 1983, there has been no major legislative initiative to accelerate treatments for rare diseases in more than 25 years

I'm Just a Bill (Schoolhouse Rock!)

Meetings & Events ● Wednesday March 28th RDLA Conference Call   ● Blog recap from the Lobby Day & Rare Disease Events in DC   ● March 29th, Senate HELP Committee Hearing - FDA User Fee Agreements: Strengthening FDA and the Medical Products Industry for the Benefit of Patients   ● Video Presentations from the 1st Rare Disease Congressional Caucus Briefing Nov. 9, 2011

TAKE ACTION! ● S 606, HR 3059, Creating Hope Act for Rare Pediatric Diseases   ● Support H.R. 4132, Faster Access to Specialized Treatments or FAST Act   ● HR 2671 The CAL Undiagnosed Diseases Research & Collaboration ACT   ● See all the Federal Legislation that affect Rare Disease Patients   ● Ask your Congress Member to join the Rare Disease Caucus

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