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Peer support

We link individuals and families affected by leukodystrophies so you can share experiences and gain mutual support. There are different forms of peer support offered in the charity which you can access.

Connecting Together

Connecting Together involves putting families and individuals in contact with each other who are affected by leukodystrophy. This can be based on the type of leukodystrophy they are affected by. However, many different leukodystrophies cause similar symptoms and challenges, so you may be connected to an individual or family with a different condition. This can be especially helpful in the case of the very rare or unnamed leukodystrophies.

If you would like to be connected to other individuals or families, then please let us know. We have received positive feedback from individuals and families who have been involved previously, who have found it can help to cope with the challenges they are facing and to feel less isolated.

To access Connecting Together and to find out more, please contact us.

Online community meetings

We hold monthly online community meetings on zoom. The meetings last an hour and a half. They are facilitated by members of the Alex TLC support team. They provide an opportunity for members of our community to connect, ask questions and offer support to each other.

These meetings are for everyone to attend. They are open to anyone affected by leukodystrophy, whether you are an affected individual, a parent, a partner, a family member or a friend. To access the meetings individuals must be registered with the charity. This allows us to provide a safe place for our members by knowing who will be attending.  Please be aware that this meeting may have individuals whom have a variety of symptoms and some with more advanced symptoms of leukodystrophy than others.

To find out when the next meetings are being held and for further information, contact info@alextlc.org

Email Us

Community Weekends

We hold an annual in person Community Weekend. Our Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.

The event is a one of its kind within the UK for those affected with a leukodystrophy. It involves presentations from medical professionals, Q&A sessions, workshops and an opportunity for peer networking.

Community Weekends

Facebook group

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.

Join our Facebook group

Funding for our peer support

Neuraxpharm UK Ltd has provided financial support (by way of a grant) for the delivery of this activity. Neuraxpharm has had no input in any aspect of the logistics of our peer support.