Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.
The goals of Rare Disease Day at NIH are to:
– Demonstrate the NIH commitment to helping people with rare diseases through research.
– Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
– Initiate a mutually beneficial dialogue among the rare diseases community.
– Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
– Shine a spotlight on stories told by people living with a rare disease, their families and their communities.
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