Welcome to Leukodystrophy Carers, an online support community for anyone caring for someone affected by genetic leukodystrophies, including families, friends and carers.

This community is run by Alex, The Leukodystrophy Charity (Alex TLC), a charity who supports individuals and families affected by genetic leukodystrophies. We provide emotional and financial support to patients and families affected, including a grants programme that helps families cover vital support costs. We provide practical information and advice to patients and families to help them make informed decisions about their health and social care needs. We also help fund medical research projects looking into finding better treatment or a cure for the disorder.

This page is for anyone who is caring for someone affected by genetic leukodystrophies. For support for those diagnosed with leukodystrophies, go to our Leukodystrophy Support page (healthunlocked.com/leukodystrophy-support). Those with Adrenomyeloneuropathy (AMN) have their own dedicated community, AMN Easier (healthunlocked.com/amneasier).

Leukodystrophies are rare, genetic conditions primarily affecting central nervous system white matter. You can find out more about each condition on the Alex TLC website. 

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