5th September 2025
Attend our Community Weekend 2025 virtually
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.
Stay up to date
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.
3rd September 2025
We have lots of locations lighting up blue in September for Leukodystrophy Awareness Month.
2nd September 2025
Leukodystrophy Awareness Month takes place every year throughout the whole of September. We have shared ways you can get involved!
1st September 2025
Due to cancellations we have 6 places available to attend the event in person. To be booked by Tuesday 2nd September.
28th August 2025
Our August 2025 edition is available. This month we will be sharing about virtually attending our community weekend, helping us hit 100 regular donors, one to one support and much more.
26th August 2025
Our next online community meeting will be taking place on Tuesday 9th September 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.
25th August 2025
It’s Leukodystrophy Awareness Month in September – the month provides an opportunity to raise awareness of leukodystrophy. Find out how you can get invovled.
22nd August 2025
Are you looking for financial support? We provide small financial grants for families and individuals affected by leukodystrophy.
18th August 2025
Our Research Summary for August 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.
15th August 2025
We are sharing our community for August of a community member who wants to be put in touch with another single parent family who only have an affected child/children with profound difficulties or disabilities.
15th August 2025
Share your leukodystrophy journey for our ‘Life with leukodystrophy campaign’ and help us to shine a light on the far-reaching impact of leukodystrophy.
8th August 2025
Over the last year 88 peer to peer connections were made by our Connecting Together programme which puts families and individuals in contact with each other who are affected by leukodystrophy.