27th March 2025
Our News Round-Up
Our March 2025 edition is available. This month we will be sharing charity updates, activities for our community to be involved in and ways you can support Alex TLC.
Stay up to date
27th March 2025
Our March 2025 edition is available. This month we will be sharing charity updates, activities for our community to be involved in and ways you can support Alex TLC.
26th March 2025
Our Research Summary for March is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
23rd March 2025
Karen Harrison, our Director of Support, will be attending and presenting at the 13th International Society for Neonatal Screening (ISNS) European regional meeting in Luxembourg.
19th March 2025
Forge Biologics’ clinical program, FBX-101, for patients with Krabbe disease has been discontinued. They have shared a letter to the Krabbe Disease community.
6th March 2025
ELA Symposium is taking place on Saturday 15th and Sunday 16th March 13:00-18:00 (GMT – UK Time) via Zoom. The symposium is open to the international community of patients affected by leukodystrophies.
26th February 2025
Our February 2025 edition is available. This month we will be announcing our Community Weekend 2025, information about a face to face community meet up in Leeds, ways to support us including Zipslide the Clyde, and many more updates!
25th February 2025
The U.S. Food and Drug Administration approved Ctexli (chenodiol) for the treatment of cerebrotendinous xanthomatosis (CTX) in adults. The approval of Ctexli was granted to Mirum Pharmaceuticals Inc.
25th February 2025
With so few available treatments, we understand that research is a significant priority and source of hope for the leukodystrophy community. Find out about our role in research.
21st February 2025
Our Research Summary for February is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
7th February 2025
Join the REMEDi4ALL webinar "Why we do clinical research and what the process looks like for participants". This beginner-friendly session will provide an introduction to clinical trials.
31st January 2025
Rosenau Family Research Foundation has funded two Krabbe Disease projects in the United States.
27th January 2025
The National Institute for Health and Care Excellence (NICE) are looking for someone with lived experience and their advocates to join the committee who develop NICE’s quality standards.