28th November 2025
Online community meeting
Our next online meeting will be taking place on Thursday 18th December 11:30-13:00.
Stay up to date
28th November 2025
Our next online meeting will be taking place on Thursday 18th December 11:30-13:00.
28th November 2025
Our November 2025 edition is available. This month we will be sharing about conferences we’ve attended, our light up the sky campaign, joining the IWMD registry and gift vouchers for our 50/50 draw.
27th November 2025
Our Research Summary for November is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
27th November 2025
Genetic Alliance have shared the fantastic news that health ministers across the UK have agreed to extend the UK Rare Diseases Framework by one year.
21st November 2025
For our community ask we’d to know about your ideas for over the festive period – including festive gifts and fun inclusive activities for the whole family.
14th November 2025
The NHSE IWMD Registry is an online clinical database that contains information about people with IWMDs or leukodystrophies. You can find out how to join.
14th November 2025
Today (Friday 14th November) our CEO, Sara Hunt, is attending the "100 Years of Metachromatic Leukodystrophy: From Discovery to Cure" conference in Tubingen, Germany.
10th November 2025
7th November 2025
6th November 2025
ULF are holding a First Aid and CPR webinar to better understand adaptive first aid strategies.
3rd November 2025
31st October 2025