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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

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EveryLife Foundation Welcomes Carol Kennedy as New Chief Development Officer

I feel fortunate to have worked previously with many of the corporate supporters of the EveryLife Foundation and am familiar with the policy and regulatory issues that we drive forward. The Foundation has an impressive presence on the Hill, in the rare disease community and with the biotechnology and pharmaceutical companies seeking treatments and cures.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
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154 Patient Orgs Urge U.S. Senate to Support OPEN ACT, S. 1421

A new letter signed by 154 patient organizations urges Senators Lamar Alexander (R-TN), Chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee, and Patty Murray (D-WA), Ranking Member of the Committee, to support the Orphan Product Extensions Now, Accelerating Cures & Treatments (OPEN ACT), S. 1421.Read More
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Foundation Hosts 7th Annual Rare Scientific Workshop on Incorporating the Patient Perspective in Rare Disease Drug Development

The Foundation hosted its 7th Annual Rare Disease Scientific Workshop entitled, "Incorporating the Patient Perspective in Rare Disease Drug Development" on September 15th in Washington, DC.Read More