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A consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.

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Participants make it possible for researchers to find new treatments, speed diagnosis, and improve the lives of those affected by rare diseases.

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Insights from Families and Caregivers Navigating Rare Diseases

To help drive research in the areas that matter most, investigators from the RDCRN asked families and caregivers to share their experiences.

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$27M Grant Renews Cincinnati Children’s as Coordinating Center for the Rare Diseases Clinical Research Network

Cincinnati Children’s will continue as the RDCRN’s Data Management and Coordinating Center for another five years.

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Rare Research Report: July 2025

Each month, we share summaries of recent Rare Diseases Clinical Research Network grant-funded publications. Catch up on RDCRN research for July 2025.

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