Home - Alex - The Leukodystrophy Charity

We are Alex,
The Leukodystrophy Charity (Alex TLC)

Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.

Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.

Information

Learn about the conditions, their symptoms, available services and treatments.

Support

Living with a leukodystrophy can be challenging, but help is available.
Find out how our services can help you cope.

Charity Shops

Our award-winning charity shop business helps raise vital funds and awareness, as well as providing volunteering opportunities and jobs for local people.

HealthUnlocked

Our online forum brings people coping with leukodystrophy together to support each other, whether they are caring for a loved one or coping with their own condition

Principles of Newborn Screening Paper

11 Key Principles of Newborn Screening to Reduce the Diagnostic Odyssey EURORDIS-Rare Diseases Europe, in collaboration with its Council of National Alliances, Council of European Federations and its members, has addressed the diagnostic odyssey of children with rare diseases in the recently published “Key Principles for Newborn Screening”.

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Research Summary – Dec 2020 – March 2021

Our latest Research Summary, which includes information about recent and existing Leukodystrophy studies. The studies are separated into categories based on the type of Leukodystrophy or topic

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Professionals

Are you a professional seeking support for a patient or client with leukodystrophy? We’re here to help.