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Little News is Good News

An editorial published by the Alliance for a Stronger FDA staff: What do the opioid legislation, the Zika legislation and Cures/Innovations bills have in common, other than that they are “hot button” issues? In each case, Congress has done its best to seriously consider healthcare problems facing our nation and managed to find compromises in order to reach consensus. Also — significantly — the three pieces of legislation are stalled by funding issues.
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Join Us to Ensure the Rare Disease Community is Heard This Summer

As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th. Registration is free and available online through Friday, July 15th. You can specify when you are available during the summer recess and how far you are willing to travel for a meeting.
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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.

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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