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 TLC Community Facebook Page
You can access peer support in our online community. We have our own Facebook Group called Alex TLC Community. It is a space for individuals affected by leukodystrophy and their family members, friends, and carers to have conversations. We hope that by having our own dedicated group on Facebook, it will ensure more of our community are able to be involved in conversations and discussions. The group is private, as a charity we will moderate who joins and we have set certain rules, so members know what to expect in the group.
Please click here to join: Alex TLC Community Group