The Leukodystrophies Disease Knowledge Page provides reference information on care of leukodystrophies.

Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes.

Care Standards - Guidelines

Minimal requirements for MRI data

Children's book: When my brother got ill. A story of Adrenoleukodystrophy (ALD)

This children's book was developed by "Alex - the Leukodystrophy Charity", located in the UK. You can read the book online for free or order a hard copy.

Patient Registries to which ERN-RND members contribute

Patient information

Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.

Further useful links, training resources, evidence and publications