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
NBS Campaign – BBC News
Aired on the 10th May – Our interview was shown on BBC South East evening news. Those interviewed included our beneficiaries Rosie and Alfie alongside Dr Davison, Britt Ekland and our support services manager Karen Harrison. #newbornscreening #ALD. Watch it here.
ARDEnt Report: Making the Unseen Seen
ARDEnt (Action for Rare Disease Empowerment) have produced a report focusing on rare disease and the lessons learned from the COVID-19 pandemic. COVID-19 swept the globe during 2020 leading to significant morbidity and mortality, impacting all aspects of life, including health and social care provision. This report demonstrates how people living with rare conditions were disproportionately affected.
Are you a professional seeking support for a patient or client with leukodystrophy? We’re here to help.