Young Adult Rare Representative with Everylife Foundation in affiliation with NORD (National Organization of Rare Diseases) on Capitol Hill, and RDLA , Rare Disease Legislative Advocate

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YARR Leadership Academy & Capstone Presentation

Graduates of the program earn about the roles and opportunities for patient representation in policy-making, drug development, and the regulatory process and the steps it takes to enter those roles.

Final Leadership Assembly Speaker Series Natalia Nov 4.pdf

About YARR

The Young Adult Rare Representatives (YARRs) is a group of young adults chosen by the organization Everylife Foundation for Rare Disease foundation in affiliation with NORD (National Organization of Rare Disease). Everylife's headquarters are located at 1012 14th Street, NW, Suite 500 Washington, DC 20005. The Young Adult Rare Representatives (YARRs) are highly motivated rare disease community members between 16 and 30 years old who advocate for state and federal rare disease legislation.

Responsibilities:

-Participate in Advocacy Day meetings with state legislators including Rare Disease Week on Capitol Hill, Rare Across America, an organized Hill day with your own rare disease group, or an independent meeting with a local legislator.

-Advocate for rare disease legislative public policies including Newborn Screening, The Orphan Drug Act 2.0" Building Upon the ODA By Strengthening Rare Disease Therapy Development Incentives, Reducing and Eliminating the Diagnostic Odyssey, and Safe Step Act.