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About Us

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 Sponsors Rally for Medical Research

The Foundation is a proud sponsor of the Rally for Medical Research again this year, joining with hundreds of patient and physician advocacy organizations, universities, research centers and biopharmaceutical industry associations to support sustained investment in the National Institutes of Health (NIH).Read More

FasterCures Wants Your Rx for Innovation

Anyone in the biomedical ecosystem from patients and physicians to researchers and academics is invited to weigh in on the greatest challenges in the discovery, development and delivery of new treatments for patients as well as potential solutions.Read More

NorthBay Biz Profiles Foundation President and Founder Emil Kakkis as a “GameChanger”

NorthBay Biz recently selected EveryLife Foundation President and Founder Emil Kakkis, MD, PhD, as one of the “GameChangers” shaping the future of the North Bay area outside of San Francisco for his lifelong pursuit of new therapies for rare disease patients.Read More

Foundation Publishes Framework for Patient Engagement in Drug Development in Nature Reviews Drug Discovery

Nature Reviews Drug Discovery recently published an article by Dr. Emil Kakkis and Max Bronstein of the EveryLife Foundation entitled, “Patients as key partners in rare disease drug development”. In the article, they propose a framework to engage patients at various stages in the development of treatments for rare diseases in order to help provide key information on disease burden, clinical trial design and the evaluation of the impact of a new treatment.Read More

Philadelphia News Station Sheds Light on Importance of OPEN ACT

Dr. Fajgenbaum urges lawmakers to pass the Open Act. It would give pharmaceutical companies a financial incentive to test existing drugs for other uses. If they win approval, the cost is more likely to be covered and families can find answers. "This is a chance to finally get attention of rare diseases and to try and find drugs to work for us that we never thought were possible," said Dr. Fajgenbaum.Read More