Alexander Disease Focus Group

Help us shape our resources

Are you or a family member affected by Alexander Disease? Join our Alexander Disease Focus group and help shape resources we are creating in the charity.

We are going to be creating Alexander Disease resources which are similar to our ALD and AMN booklets. Below are links to a few examples of the booklets:

Practical information for symptomatic cerebral ALD – Alex – The Leukodystrophy Charity (

Practical information for female carriers of ALD/AMN – Alex – The Leukodystrophy Charity (

Being part of our focus group would involve attending an online meeting through zoom with other beneficiaries to discuss development of the resources and reviewing resources sent through via email.

For more information or questions, contact


Alex - The Leukodystrophy Charity