Rare Giving
Introducing our new Rare Giving program read more

Rare Disease Stakeholders Discuss FDASIA Implementation at Congressional Caucus

On September 17, 2014, rare disease community members convened at the Rayburn Building on Capitol Hill for the Rare Disease Congressional Caucus, whose subject was “Implementation of Rare Disease Provisions in the Food & Drug Administration Safety and Innovation Act (FDASIA) P.L. 112-144.” The briefing was organized by the EveryLife Foundation for Rare Diseases’ program, Rare Disease Legislative Advocates (RDLA), in coordination with the Rare Disease Congressional Caucus co-chairs, Leonard Lance (R – NJ) and Joe Crowley (D – NY). In attendance and speaking at the caucus were patients, patient advocates, FDA representatives, pharmaceutical representatives, and Congressional staff. The primary focus of the meeting was on the key rare disease sections of FDASIA.  To read more>>>


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


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

NORD Rare Disease and Orphan Product Breakthroughs Summit, Washington DC, October 21-22

Newborn Screening and Genetic Testing Symposium, Anaheim CA, October 26-30

Rare Voice Awards, Washington DC, November 13

Partnering for Cures NYC, New York NY, November 16-18

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