What we do

Alex, The Leukodystrophy Charity provides high quality support, advice, knowledge and care for those affected by leukodystrophy: rare progressive diseases affecting the brain and spinal cord.

The majority of these conditions are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.

How can you support us this Rare Disease Day?


We are a small charity with no government funding, so we rely on donations from amazing people like you to help fund our vital work.

Follow us on Social Media

Leukodystrophy is still very unheard of, and some people will go undiagnosed because of this. It is therefore vital that we spread awareness of these diseases through social media. Please follow our accounts and share our posts to help spread the word.

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