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.

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

Britt Ekland – Alex TLC Patron

A huge welcome to our new Patron, the incredible Britt Ekland “It’s a huge boost for us to have such a high profile celebrity coming on board to help raise awareness of leukodystrophy. We’re very much looking forward to working with Britt as our newest patron, and applaud her willingness to use her personal story in the fight to bring newborn screening for ALD to the UK.”Sara Hunt – CEO

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Family Perspectives on Newborn Screening for X-Linked ALD in California

An interesting paper exploring the experiences of how a diagnosis of ALD is communicated to parents through the Californian newborn screening programme.

Read full story >

Professionals

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