15th January 2026
4H Leukodystrophy virtual conference
Yaya Foundation are holding a virtual conference for 4H leukodystrophy. The are holding a series of weekly sessions on different topics.
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15th January 2026
Yaya Foundation are holding a virtual conference for 4H leukodystrophy. The are holding a series of weekly sessions on different topics.
13th January 2026
We are pleased to announce that our Community Weekend 2026 will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate.
28th November 2025
Our next online meeting will be taking place on Thursday 18th December 11:30-13:00.
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.
6th November 2025
ULF are holding a First Aid and CPR webinar to better understand adaptive first aid strategies.
27th October 2025
Our CEO, Sara, attended the ERN-RND annual meeting. Sara was representing leukodystrophy patients as part of her European Patient Advocate role.
22nd October 2025
Join us on Sunday 26th October at 14:00 for our next Connecting Communities call for individuals and families affected by ALD.
8th October 2025
Our Research Analyst, Kristina, will be attending Beacon’s Manchester Rare Disease Showcase on 26th November.
29th September 2025
Our next online community meeting will be taking place on Tuesday 21st October 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.
26th September 2025
Our September 2025 edition is available. This month we will be sharing about Leukodystrophy Awareness Month, Twickenham Stadium Zip Wire, using easyfundraising on the Prime Big Deal Days, two press releases from Ionis and much more.
5th September 2025
We will be live streaming presentations from our Community Weekend in September. For those unable to attend in person, we are offering the option to attend virtually for free.
2nd September 2025
Leukodystrophy Awareness Month takes place every year throughout the whole of September. We have shared ways you can get involved!