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IDF Advocate Connections: Becoming A Rare Disease Advisory Council Member
Manage episode 319151737 series 2539199
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For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments. With us today to discuss their work with RDACs in their state is a panel of IDF advocates: Jessica Goddard and Rachel Goddard from South Carolina, and Marian Furst from Utah.
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