2nd September 2026
Charity Impact Report 2026 available to view
We are pleased to announce that our Charity Impact Report 2026 is now available to view.
Stay up to date
2nd September 2026
We are pleased to announce that our Charity Impact Report 2026 is now available to view.
28th August 2026
Our next online meeting will be taking place on Tuesday 22nd September 11:30-13:00 (BST – UK time). Our general monthly online community meetings are open to anyone affected by leukodystrophy.
28th August 2026
A research team at King’s College London carrying out a study looking at how social care support could be improved for children with life-limiting conditions and their families.
28th August 2026
This month we will be sharing about leukodystrophy awareness month, the newest member of our team, wear it blue and joining our community weekend virtually!
27th August 2026
Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
25th August 2026
Please complete this survey if you have used our Support Services at any time. This includes one to one support, online community meetings, our connecting together programme and our Facebook group.
21st August 2026
18th August 2026
17th August 2026
4th August 2026
In this 10-minute interview from EURORDIS-Rare Diseases Europe, Sarah Baker, CEO of CamRARE, explains how the Rare Patient Passport came about and the difference it can make for patients and families.
30th July 2026
We’ve been selected to take part alongside 2 other charities this August.
The charity with the highest number of votes will win the donation.
28th July 2026
Alex TLC recently submitted evidence for the Scottish Medicine Consortium review of the medicine Libmeldy for approval of it through NHS Scotland for patients with metachromatic leukodystrophy (MLD).