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Rare Diseases: From Data to Discovery, From Discovery to Care — Photo by Gustavo Fring on Pexels

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Inside the Rare Disease Data Center: How One Patient’s Journey Shows the Power of Integrated Registries

Inside the Rare Disease Data Center: How One Patient’s Journey Shows the Power of Integrated Registries In 2023, more than 7,000 rare diseases were cataloged in the FDA’s Rare Disease Database. A rare disease data center is a centralized, curated repository that links genetic, clinical, and real-world