Peer support

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.

Alex - The Leukodystrophy Charity

Health Unlocked

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.

The Leukodystrophy Support page is for all those directly affected by a Leukodystrophy, for example those with symptoms, carers, loved ones of someone affected.

Leukodystrophy Carriers  is a brand-new page for all carriers of Leukodystrophy, whether symptomatic or asymptomatic, old or young.

Remember that we also have the page AMN Easier to discuss AMN related worries or tips.

Posts are answered by peers and by Alex TLC staff and volunteers, who also moderate the sites in accordance with the Health Unlocked terms; polls help us to understand how leukodystrophy affects you and your family.

Let us help you connect with other individuals and families coping with similar symptoms and conditions in the leukodystrophy family. Share your experiences, feelings, worries and advice with the Alex TLC community and help us create a supportive environment for all affected by genetic leukodystrophy.

Sign up for a free Health Unlocked account today, and join us using the links below:

Leukodystrophy Support

Leukodystrophy Carriers

AMN Easier (specific to those with adrenomyeloneuropathy)