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Of the 1 in 10 Americans living with a rare disease, only a small number of them receive a timely diagnosis. For many rare disease patients, the long journey to diagnosis remains one of the biggest challenges – jeopardizing health, time, and essential access to care and treatment.Â
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What barriers stand in the way of rare disease patients receiving an accurate diagnosis and getting the support they need? What will it take to improve diagnostics for the rare disease community, and what funding and coordinated efforts can make a difference? How do we need to reshape the policy framework for rare disease in order to move the dial on enhanced diagnosis and treatment?Â
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Join The Hill for a discussion on improving the diagnostic journey for the 30 million Americans living with rare disease.
