As an organisation supporting those with a diagnosis of leukodystrophy, we know how difficult it can be to access good reliable information. Our Support Services Team are available to help you support families affected by leukodystrophies. You can contact us here.
All the information we produce has been checked by specialists in the field of leukodystrophy so you can be assured our information is accurate and from reliable sources.
Below are links to pages on our website which we think you may find helpful:
We wanted to share leukodystrophy resources that are suitable and relevant for professionals.
The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND). It is a useful resource for professional development, clinical support and advice.
To find out more: ERN-RND website
ALD Diagnosis Guidelines
The European Reference Network for Rare Neurological Diseases (ERN-RND) has endorsed guidelines for X-ALD to help guide the diagnosis and recommends they are used.
The MLD initiative (MLDi) is a European disease registry for metachromatic leukodystrophy (MLD) and a multi-stakeholder collaboration. Their aim is to improve disease management of metachromatic leukodystrophy through an international disease registry and multistakeholder collaboration. The MLD initiative collects patient data for research and healthcare purposes. Researching rare diseases is difficult because of small patient numbers. Therefore, clustering data in a European database is needed. The MLDi initiates, coordinates, and manages various projects focused on improving the care for MLD.
To find out more, visit: MLD initiative website