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We are asking Patient Organizations to partner with us to help share our goals with their members and when the time is right - to reach out to the FDA and Congress to help implement new regulatory policy that will put Orphan Treatments on the FAST TRACK.

Recent Updates


EveryLife Foundation Submits Comments for 21st Century Cures White Paper Incentivize

The EveryLife Foundation for Rare diseases has submitted comments in response to the white papers released for Congress’ 21st Century Cures Initiative.  In these comments, the EveryLife Foundation for Rare Diseases outlines their 6 Policy Priorities for the 21st Century Cures Initiative:

 1)      Improve the accessibility of the Accelerated Approval pathway by encouraging the FDA to allow new predictable scientific criteria for surrogate and biomarker endpoints used to evaluate treatments for rare disorders, consistent with FDASIA. Read More


White Paper on Development of Rare Disease Drugs Submitted for Publication CTP-1

The EveryLife Foundation for Rare Diseases has submitted our White Paper on the Development of Rare Disease Drugs using the Accelerated Approval Pathway to Orphanet for publication.  Below is the abstract of the paper, followed by a link to the paper in its entirety. Read More