President Obama Signs FDA User Fee Legislation
July 11, 2012, Washington, DC - President Obama signed into law The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187, bipartisan legislation that will spur the development of lifesaving treatments for 30 million Americans suffering from rare diseases. "We are thrilled the language to improve access to the FDA's Accelerated Approval pathway for rare diseases has been included in FDASIA," said Emil Kakkis, MD, President, EveryLife Foundation for Rare Diseases. "We wish to thank Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY) for being champions for the rare disease community."
About
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.
Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans.
Events
Rare Disease Workshop #5, Washington, D.C., May 15, 2013
- Workshop 5: Accelerated Approval for Rare Disease Treatments
Italian Street Painting Marin, San Rafael, CA, June 29 & 30, 2013
Programs and Initiatives
