Take Action


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Participate Remotely in In-District Lobby Days This Summer

Please join the more than 230 advocates who are meeting with their federal legislators during August recess by contacting your Members of Congress. It is easy to participate remotely, and you can do it on your own timeframe!
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FDA User Fee Package Passes in the Senate, Awaiting President's Signature

The Senate has passed the Food and Drug Administration Reauthorization Act (FDARA), a legislative package that supplements FDA funding by requiring manufactures to pay user fees when submitting medical products for review in exchange for a timely approval process.
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Rare Disease Advocates Invited to Join Rally for Medical Research on September 14th

Join more than 300 hundred patient and physician advocacy organizations, universities, research centers and biopharmaceutical industry associations at the Rally for Medical Research on September 14th in Washington, DC to support sustained investment in the NIH.

About RDLA

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.

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