This page provides information on leukodystrophies for which most of it has been endorsed by ERN-RND members. It is structured as follows:
- ERN-RND centres
- Care standards
- Clinical studies & trials
- Patient organisations
- Study groups & networks
- Useful links, training resources, evidence and publications
- CPMS use case
According to the European Leukodystrophies Association, "leukodystrophies, which refers to a group of rare genetic diseases, destroy the central nervous system (brain and spinal cord) in children and adults. They affect the myelin, the white substance coating the nerves like an insulating sheath." Please find more information on the ELA's website.
- ERN-RND recommended disease rating scales
- ERN-RND endorsed guidelines
- Registries to which ERN-RND members contribute
- Other registries
Patient organisations are non-profit organisations which are patient-focused where patients and/or carers represent a majority of members in governing bodies (European Medicines Agency, 2014). Herewith, we provide a list of national and European patient organisations that work in the disease area that is covered by ERN-RND.
Study groups & networks
The listed study groups and disease networks are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.