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.
Living with a leukodystrophy can be challenging, but help is available.
Find out how our services can help you cope.
Our award-winning charity shop business helps raise vital funds and awareness, as well as providing volunteering opportunities and jobs for local people.
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
Patient Experience Survey 2020
This survey by Genetic Alliance is designed to capture the experience of patients affected by rare and undiagnosed conditions, and their carers. The survey should take approximately 30 minutes to complete.
Adrenoleukodystrophy Newborn Screening in the Netherlands (SCAN Study): The X-Factor
Dutch scientists develop algorithm to overcome the logistical problems of initiating boys-only new born screening for ALD. This is a ground breaking development and will be a first for gender specific new born screening. This is an important step forward in adding ALD to the new born screening programme in the Netherlands and also excellent news for other countries, like the UK, in their own battles.
Are you a professional seeking support for a patient or client with leukodystrophy? We’re here to help.