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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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Rare Research Report: June 2024

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.

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Rare Research Report: May 2024

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.

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National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families

The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.

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