Community Weekend 2023

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.

We will be holding our Community Weekend on Friday 28th April to Monday 1st May 2023 at the Hilton Birmingham Metropole at the NEC. Due to a high demand to attend our Community Weekend, unfortunately bookings are now closed, as we have reached full capacity.

For professionals, patient organisations and pharmaceutical organisation interested in presenting at the event, please contact

Alex - The Leukodystrophy Charity

What’s Involved?

  • Presentations from medical professionals
  • Group Q & A sessions
  • Workshops & activities for families
  • Peer networking & support
  • Geographically central UK venue
  • All-inclusive for affected families
  • A wealth of knowledge & research


Why are they important?

The event is a one of its kind within the UK for those affected with a leukodystrophy. In 2019 we expanded our services, due to increasing demand, to support all leukodystrophies. Our vision is to build stronger peer support networks, awareness, and education through a vital calendar community event to complement our support services for families and sufferers whilst facilitating open dialogue with medical professionals. Our weekend event sets a legacy and influences our community communications well into the future, creating peer support networks that our families so desperately need.

Alex TLC currently receives no government funding and the charity’s running costs are funded through the profits from our five Charity Shops. We rely heavily on donations, grants, and fundraising initiatives to maintain our support services for all those affected with these diseases.

Alex - The Leukodystrophy Charity

Key Funders of our Community Weekend 2023

Minoryx Therapeutics               

Find out more by visiting their website: Minoryx Therapeutics

Orchard Therapeutics     

Find out more by visiting their website: Orchard Therapeutics

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British Trust for the Myelin Project

Find out more by visiting their website: The British Trust for The Myelin Project


Jeans for Genes

Find out more by visiting their website: Jeans for Genes

Previous Community Weekends

Digital Community Weekend 2021

We recorded presentations at the weekend and the content is available on our YouTube channel. To access the playlist of the content, click on the link: DCW 2021 Playlist

We held Question and Answer sessions involving the professionals that presented on each of the days. We produced a written summary of the questions and answers discussed during these sessions. Please click on the link to view the summary: Q&A Summary

The Impact Report for our Digital Community Weekend 2021 is now available to view. To view, please click on the link: Impact Report


Digital Community Weekend 2020

Our 2020 Community Weekend was a great success, for those who were unable to attend we have released many of the presentations and talks on our YouTube channel. To access the playlist of the content, click on the link: DCW 2020 Playlist

Alex - The Leukodystrophy Charity

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