23rd April 2026
Charity Impact Survey 2026
Please complete our Impact Survey 2026 and share your feedback. For anyone who has a connection with Alex TLC through their/the person they care for leukodystrophy.
Stay up to date
23rd April 2026
Please complete our Impact Survey 2026 and share your feedback. For anyone who has a connection with Alex TLC through their/the person they care for leukodystrophy.
23rd April 2026
Are you or a loved one affected by Metachromatic Leukodystrophy (MLD)? We need help with developing a patient journey for patients with MLD.
26th March 2026
We have sent out the March edition of our monthly news round-up. This month we will be sharing about events we’ve been attending, your chance to have your say on supporting us and Ask our Community.
24th March 2026
The U.S. Food and Drug Administration (FDA) has accepted Ionis New Drug Application (NDA) for zilganersen, the investigational treatment for Alexander Disease for Priority Review.
24th March 2026
Our Research Summary for March is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
3rd March 2026
Resources available for individuals affected by VWMD focused on consensus recommendations for diagnosis and management of the condition.
25th February 2026
A recently published news article discusses the importance of research for the progression of treatments for Rare Diseases.
24th February 2026
We have sent out the February edition of our monthly news round-up. This month we will be sharing about Rare Disease Day, our counselling service, lighting up our stained glass window and newborn screening updates.
24th February 2026
Our Research Summary for February is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
23rd February 2026
The open letter to Ionis is in response to the announcement regarding the opening of the Expanded Access Program (EAP) for zilganersen in the United States.
13th February 2026
‘The Grey Zone Project: Risk-Based Classification of ABCD1 Variants in X-Linked Adrenoleukodystrophy’ research article will be used as part of our evidence to add ALD to the newborn screening programme in the UK.
10th February 2026
Murdoch Children’s Research Institute are conducting a natural history study in individuals with Leigh Syndrome.