Resources
Global Genes
https://www.globalgenes.org has a Rare Concierge service that can answer all questions related to rare disease.
United Leukodystrophy Foundation
https://www.ulf.org is chocked full of information related to all types of leukodystrophies and the efforts being made to find treatments and cures.
Alex-The Leukodystrophy Charity
https://alextlc.org serves the United Kingdom community affected by leukodystrophies.
LibRAREy
https://www.librarey.com offers a searchable database for resources available to the rare community.
Global Leukodystrophy Initiative-Clinial Trial Network
The GLIA-CTN is a consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.