Stay up to date
13th May 2026
The Department of Health and Social Care has circulated a care coordination survey on CONCORD2 – a research study that aims to examine the best approaches to care coordination for people affected by rare conditions.
8th May 2026
"An Irish child is among a small group whose progress is being monitored internationally after receiving a potentially life-saving experimental gene therapy in the United States"
8th May 2026
Ionis has released a recent Community Statement to the AxD community. The statement includes updates on their zilganersen program and work to advance access outside the US.
4th May 2026
Our next online meeting will be taking place on Wednesday 20th May (BST – UK time).
30th April 2026
The Brain Health Learning Centre are holding a webinar exploring one of the most important and fast moving areas in dementia. The webinar will provide an introduction to childhood dementia.
30th April 2026
We have sent out the April edition of our monthly news round-up. This month we will be sharing about upcoming online group meetings, celebrating 2 years of Alex TLC’s 50/50 Cash Draw, one to one support and our online shop.
30th April 2026
Alex TLC’s 50/50 Cash Draw is celebrating 2 years! In that time we’ve given away £3,620.50 of cash prizes, and raised £4,084 for Alex TLC
29th April 2026
Our Research Summary for April is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
23rd April 2026
Please complete our Impact Survey 2026 and share your feedback. For anyone who has a connection with Alex TLC through their/the person they care for leukodystrophy.
23rd April 2026
Are you or a loved one affected by Metachromatic Leukodystrophy (MLD)? We need help with developing a patient journey for patients with MLD.
22nd April 2026
A community member would like to find out about others’ experiences of Bone Marrow Transplant (BMT) follow up care after a BMT for Adrenoleukodystrophy (ALD).
16th April 2026
Our children’s book to support the siblings of children diagnosed with CCALD is now available in English, Spanish and German.
