The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit 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

Recent News


Foundation Offers Scholarships for FDA Workshop on Effective Engagement

On March 31st, the FDA will host a public workshop to help the public and patient advocacy groups better understand the Center for Drug Evaluation and Research. Titled “Navigating CDER: What You Should Know for Effective Engagement”, the workshop offers a valuable learning experience for rare disease advocates.Read More
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Announcing the 2015 Rare Artist Contest Award Recipients

We would first like to offer a heartfelt thank you to everyone who contributed to this year’s contest. We received more than 275 entries in this year’s contest, all of which demonstrated the extraordinary breadth of talent possessed by the rare disease community.Read More

Senate chairman: Cures bill is next priority

The Senate Health Committee will be turning its attention to a medical innovation bill now that it has completed the overhaul of No Child Left Behind, Chairman Lamar Alexander (R-Tenn.) said. The idea behind both bills is to speed up the Food and Drug Administration’s approval process for new drugs and boost funding for research at the National Institutes of Health (NIH). The 21st Century Cures bill passed the House on a bipartisan vote in July, but since then the momentum has slowed.Read More

Foundation Joins Patient Groups Urging Senate to Support Rob Califf for FDA Commissioner

The EveryLife Foundation supports the following sign-on letter written to Senators Lamar Alexander (R-TN) and Patty Murray (D-WA) asking for the swift confirmation of Rob Califf, MD, as FDA Commissioner:Read More

Dr. Emil Kakkis and Thought Leaders Urge Action on Biomarkers in New York Times

Dr. Emil Kakkis and veteran patient advocate Steve Smith joined forces with former House Speaker Newt Gingerich and a host of others to draw attention to the need for action on biomarkers. Uniting under the common thread that “Everyone will be a patient someday”, 29 thought leaders urged Congress to chart a path for advancing biomarker qualification.Read More