In response to the FDA’s draft guidance on Expedited Programs for Serious Conditions, Representatives Gus Bilirakis (R-FL), GK Butterfield (D-NC), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) circulated a bipartisan letter in Congress calling on the FDA to fulfill the mandate to improve access to the Accelerated Approval pathway for rare diseases as required by The Food and Drug Administration Safety and Innovation Act (FDASIA). The rare disease community jumped into action, contacting their Members of Congress and urging them to sign. On September 20, 2013, the final letter was sent with 109 Congressional signatures.
The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.
World Orphan Drug Conference 2014, Washington DC, April 23-25, 2014
American Society of Gene & Cell Therapy 2014 Commercialization Workshop, Washington DC, May 20th, 2014
2014 BIO International Convention, San Diego, CA, June 23-26, 2014
EveryLife Foundation for Rare Diseases 2014 Scientific Workshop, Washington DC, September 16, 2014