16th April 2026
Our children’s book for ALD is available in 3 languages
Our children’s book to support the siblings of children diagnosed with CCALD is now available in English, Spanish and German.
Stay up to date
16th April 2026
Our children’s book to support the siblings of children diagnosed with CCALD is now available in English, Spanish and German.
14th April 2026
A community member would like to know if anyone uses any equipment, devices or phone apps for seizure alerts.
2nd April 2026
Our next online meeting will be taking place on Thursday 23rd April 11:30-13:00 (BST – UK time).
27th March 2026
We wanted to share a recent announcement affecting those with Addison’s Disease. Hydrocortisone sodium phosphate injection (the pre-mixed hydrocortisone injection) has been discontinued.
26th March 2026
We have sent out the March edition of our monthly news round-up. This month we will be sharing about events we’ve been attending, your chance to have your say on supporting us and Ask our Community.
24th March 2026
The U.S. Food and Drug Administration (FDA) has accepted Ionis New Drug Application (NDA) for zilganersen, the investigational treatment for Alexander Disease for Priority Review.
24th March 2026
Our Research Summary for March is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
21st March 2026
Have your say on supporting Alex TLC! Times are tough for everyone and we want to make sure we’re doing everything we can to make it easier and more rewarding to support us. We’d really appreciate it if you could complete this quick survey. It only takes a few minutes! Complete survey. Thank you.
12th March 2026
March is Women’s History Month. This is an excellent opportunity to celebrate the amazing women making an impact across the leukodystrophy community.
10th March 2026
Ask our community provides an opportunity to ask our community members for information, suggestions, recommendations, or feedback about their experiences.
10th March 2026
As Mother’s Day approaches, it can lead to mixed and complicated feelings for many. Our Counsellor, Mel has some comforting advice for those who need it.
9th March 2026
Do you or a love one use a patient passport? A recent study "Patient passports for rare diseases: results of a pilot study" has demonstrated a positive impact for individuals who utilise this tool.