We link individuals and families affected by leukodystrophies so you can share experiences and gain mutual support. The way we do this is by putting families in contact with each other who have the same condition or with similar symptoms. Putting people in contact with each other by similar symptoms can be especially helpful in the case of the very rare or unnamed leukodystrophies. If you would like to talk to other families then please let us know. The families we support have all said that this peer support is invaluable in helping them to cope and feel less isolated. Please contact us to access this support.
We also arrange a Community Weekend Conference every two years to bring families and experts from around the world together for support and education.
Alternatively, you can access peer support through our Health Unlocked community. Here you can discuss issues and seek advice and support on our secure online forum.
Health Unlocked is an online forum, bringing people together to support one another with health conditions. Alex TLC have two Health Unlocked forums: Leukodystrophy Carers and Leukodystrophy Support, as well as supporting a third forum, AMN Easier.
Leukodystrophy Carers is focused on those caring for someone with leukodystrophy, for example parents discussing their children’s condition. Leukodystrophy Support is a space to allow those coping with these conditions themselves to share experiences and advice. AMN Easier (is a well-established and active discussion site for those with AMN (adrenomyeloneuropathy).
Posts are answered by peers and by Alex TLC staff, and are moderated by Alex TLC staff where necessary, in accordance with the Health Unlocked terms. Polls run on the site help us to understand how leukodystrophy affects you and your family.
Share your experiences and advice with the Alex The Leukodystrophy Charity community and connect with other individuals and families coping with similar symptoms and conditions in the leukodystrophy family.
Sign up for a free Health Unlocked account today, and join us using the links below:
Leukodystrophy Carers (formerly ALD Life)
AMN Easier (specific to those with adrenomyeloneuropathy)