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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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Rare Research Report: December 2024

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

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Leukodystrophy Over Time: What We’re Learning from a Natural History Study

To learn more about the natural history of leukodystrophy, the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is conducting a study, “GLIA-CTN EHR Data Extraction Project.”

Leukodystrophy Over Time: What We’re Learning from a Natural History Study

Join RDCRN at Rare Disease Day at NIH on February 28

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Tuesday, February 28, 2023, from 9 am to 5 pm EST. Each year, the NIH’s National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor the event as part of the global Rare Disease Day observance.

Rare Disease Day at NIH. February 28, 2023. #RDDNIH.