NIH to Open Undiagnosed Disease Network
The NIH is expanding its role in assisting rare disease research. read more
EveryLife Foundation for Rare Diseases Turns Five!
Thanks to everyone who came out for our fifth anniversary! read more
Announcing the 2014 Rare Artist Contest Award Recipients!
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EveryLife Foundation Submits Comments on First 21st Century Cures White Paper


EveryLife Foundation Submits Comments on First 21st Century Cures White Paper The EveryLife Foundation for Rare Diseases laid-out their policy priorities for Congress to educate them on the needs of the rare disease community. Read the full comments, and learn how EveryLife is working to ensure the voice of our community is heard for this important new legislation.  To read more>>>

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. read more

Events


Rare Disease Legislative Advocates’ In-District Lobby Days, Nationwide, August 4- September 5, 2014

FDA Meeting on Biomarker Development, Washington DC, September 5, 2014

Global Genes Patient Advocacy Summit, Long Beach CA, September 11-13, 2014

EveryLife Foundation for Rare Diseases 2014 Scientific Workshop, Washington DC, September 16, 2014

BIO Patient & Health Advocacy Summit, Washington DC, October 14-15, 2014

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Programs and Initiatives



Foundation Programs



Supported Programs