12th March 2026
Women’s History Month
March is Women’s History Month. This is an excellent opportunity to celebrate the amazing women making an impact across the leukodystrophy community.
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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.
11th February 2026
We are pleased to announce that bookings for our Community Weekend 2026 are now open. The event will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate Hotel.
22nd December 2025
Our December 2025 edition is available. This month we will be sharing about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026.
10th November 2025
7th November 2025
3rd November 2025
5th June 2025
20th March 2025
7th February 2025
Connecting Together involves putting families and individuals in contact with each other who face shared symptoms and challenges.
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.
22nd January 2025
Primark launches clothing range designed for people with disabilities. The range of 49 pieces, includes womenswear and menswear, is adapted from brand’s bestselling items to suit variety of needs.
11th September 2024
There is a clinical trial being conducted in the US called Calyx, A Clinical Study to Assess the Efficacy and Safety of Leriglitazone in Adult Male Subjects With Cerebral Adrenoleukodystrophy. This study is open to patients from any location who meet certain criteria (some of which may be flexible)