4th June 2026
What is the NHS England IWMD service?
The NHS England IWMD Diagnostic and Management Service aims to implement national standards of care for patients of all ages with an IWMD (leukodystrophy).
Stay up to date
4th June 2026
The NHS England IWMD Diagnostic and Management Service aims to implement national standards of care for patients of all ages with an IWMD (leukodystrophy).
4th June 2026
Join our next online community meeting on Thursday 25th June from 11:30 to 13:00 on Zoom.
4th June 2026
We have planned a range of different group specific meetings over the next few months, including for parents of affected children and affected men.
3rd June 2026
Join us for a workshop in a box and share your view on rare disease policy.
28th May 2026
We have sent out the May edition of our monthly news round-up. This month we will be sharing about a job opportunity within the charity, upcoming online community meetings, the devastating flood at one of our charity shops and ways you can get involved.
27th May 2026
Our Research Summary for May is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
18th May 2026
ADSHG is leading on a UK project called The Real Story: Adrenal Crisis Management in the UK, which involves a follow up survey and in-depth interviews to capture your experiences of preventing and managing adrenal crisis.
15th May 2026
A community member would like to know if anyone used any private genetic testing companies.
13th May 2026
The Department of Health and Social Care has circulated a care coordination survey on CONCORD2 – a research study that aims to examine the best approaches to care coordination for people affected by rare conditions.
8th May 2026
"An Irish child is among a small group whose progress is being monitored internationally after receiving a potentially life-saving experimental gene therapy in the United States"
8th May 2026
Ionis has released a recent Community Statement to the AxD community. The statement includes updates on their zilganersen program and work to advance access outside the US.
4th May 2026
Our next online meeting will be taking place on Wednesday 20th May (BST – UK time).