16th June 2026
Stay up to date
16th June 2026
11th June 2026
Our accredited counsellor, Mel, provides free counselling to our adult community members. She also offers emotional wellbeing phone calls to those who need someone to talk to.
11th June 2026
We are looking for families in our community who speak Persian to connect with a family who have a child affected by leukodystrophy.
10th June 2026
In June our CEO, Sara, visited a specialist rare disease centre at Motol University Hospital in Prague as part of her ERN-RND patient advocate duties.
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.