A consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.
Join one of our research studies
Participants make it possible for researchers to find new treatments, speed diagnosis, and improve the lives of those affected by rare diseases.
Find a study
Rare Research Report: December 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.
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.”
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.
