6th November 2026
ALD Worm Lab visit
Our CEO, Sara, visited the adrenoleukodystrophy (ALD) worm models being used in a drug repurposing research project at the MRC Laboratory of Medical Sciences.
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6th November 2026
Our CEO, Sara, visited the adrenoleukodystrophy (ALD) worm models being used in a drug repurposing research project at the MRC Laboratory of Medical Sciences.
28th October 2026
Our next online meeting will be taking place on Tuesday 17th November 11:30-13:00 (GMT – UK time).
28th October 2026
We have created an understanding genetics page on our website with helpful information to understanding genetics and genetic conditions.
28th October 2026
This month we will be sharing about how to watch our Community Weekend presentations and view the wonderful event photos, our Teemill Christmas collection and our recently created understanding genetics page.
26th October 2026
Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
26th October 2026
Our electronic children’s book to support siblings of children diagnosed with CCALD is available in 4 languages.
23rd October 2026
Watch presentations from our Community Weekend 2026 on our YouTube channel.
20th October 2026
European Commission grants marketing authorisation for NEZGLYAL® (leriglitazone), the first pharmacological treatment approved for cerebral Adrenoleukodystrophy (cALD).
2nd October 2026
Our next online meeting will be taking place on Thursday 22nd October 11:30-13:00 (BST – UK time).
30th September 2026
This month we will be sharing about our charity impact report, donating to our community weekend, FreeWills Month and treatment updates for MLD & Alexander Disease!
28th September 2026
Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
18th September 2026
A community member would like to know if anyone else has had to cope with having an arm in a sling for a number of weeks.