rare disease clinical research network

Alexion data at 2026 AAN Annual Meeting reflects industry-leading portfolio and commitment to enhancing care across rare dise

Rare Disease Data Center Drives 3× Remission Rate

The Rare Disease Data Center has driven a three-fold increase in remission rates for complement-mediated disorders, delivering a 38% higher remission than industry averages at the 2026 AAN meeting. This breakthrough stems from integrated AI tools and a unified patient registry. It signals a new benchmark for rare disease care.

01 May 2026

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

rare disease clinical research network

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

29 Apr 2026

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