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RECENT NEWS

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Rare Disease Week on Capitol Hill 2018 Brings Hundreds of Advocates to Capitol to Educate Congress

Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week's events.
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Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely

We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
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Youth Advocacy during Rare Disease Week on Capitol Hill

 As our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference.  This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.

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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