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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


Rare Disease Patient Voices Bring Change To The Clinical Trials Process 21st Century Cures

From Forbes:

The voices of rare disease patient advocates play a unique and critical role in the modernization of the clinical trials process, which advocates see as antiquated and unable to sufficiently address their unmet medical needs. A slogging, expensive regulatory burden has long held the enthusiasm of drug developers and investors in check. Read More


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