Leukodystrophies
The Leukodystophies Disease Knowledge Page provides reference information on care of Leukodystrophies.
Disease Knowledge Documents
Information and knowledge that has been developed or endorsed by ERN-RND can be found in blue boxes.
Defintion
ERN-RND Centres for Leukodystrophies
Care Standards
Available in many European languages.
Clinical Rating Scale
Gross-Motor Function Classification for Metachromatic Leukodystrophie (GMFC-MLD)
Online Medical Education
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.
Information for Patients – Endorsed by ERN-RND
Available in many European languages.
Information for Patients
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
Patient Organisations
Clinical Studies and Trials
Patient Registries (to which ERN-RND members contribute)
Leukodystrophies patient registries
Clinical Studies and Trials
