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Nominations for Fifth Annual RareVoice Awards Due by July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.
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Today's In-District Lobby Days & Legislative Conferences Informational Webinar

RDLA hosted an informational webinar this morning on how you can get registered for the In-District Lobby Days and Legislative Conferences in Boston, Chicago and Seattle. These half-day conferences will include discussions with federal elected officials, academics, patient advocates and other rare disease stakeholders. They will also provide attendees with the opportunity to network and learn from others in the rare disease community.
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Senate Holds Third and Final Markup of Biomedical Innovation Legislation

On April 6th, the Senate Health, Education, Labor and Pensions (HELP) Committee held the last of three markups to discuss biomedical innovation legislation. The legislation considered and approved in those mark-ups will be conferenced with the 21st Century Cures Act which passed the House of Representatives with broad bipartisan support last summer. In addition to approving the five bills under consideration, members of the Committee offered several amendments of particular interest to the rare disease community.

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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