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.
Definition
ERN-RND centres for leukodystrophies
Educational webinars
- Introduction to leukodystrophies by Nicole Wolf
- X-linked adrenoleukodystrophy by Marc Engelen
- X-linked adrenoleukodystrophies - update (paediatric focus) by Caroline Sevin
- Pelizaeus-Merzbacher disease and related disorders by Nicole Wolf
- Update metachromatic leukodystrophy by Samuel Gröschel & Ingeborg Krägeloh-Mann
- Adult leukodystrophies - early symptoms of late onset leukodystrophies by Fanny Mochel
- Hypomyelination by Nicole Wolf
- MRI pattern recognition in leukodystrophies by Nicole Wolf
- Treatment of spasticity in HSP & leukodystrophies by Annemieke Buizer
Care Standards - Guidelines
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 organisations
Patient Registries to which ERN-RND members contribute
Clinical studies & trials
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.
- Paediatric
- Video on Genetics and Inheritance