Stay up to date
8th August 2025
Hundreds of thousands of people diagnosed with long-term health conditions will receive extra help and support from expert charities, under a new service announced by the Prime Minister.
7th August 2025
Have you recently moved from ESA to Universal Credit through the managed migration process? Turn2us have shared some helpful information about the process and created an informative guide.
7th August 2025
Azafaros announcement of first patient dosed in global pivotal clinical trial phase 3 program for late infantile/juvenile onset NPC and GM1/GM2 gangliosidoses.
30th July 2025
Our Director of Support, Karen, offers one to one support to individuals and family members affected by leukodystrophy. During these sessions Karen can assist with completing forms including DLA, PIP, blue badge and moving from ESA to UC.
30th July 2025
Our next online community meeting will be taking place on Wednesday 20th August 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.
29th July 2025
Our July 2025 edition is available. This month we will be sharing charity updates, activities for our community to be involved in and ways you can support Alex TLC.
28th July 2025
Should MLD to be added to the newborn screening programme in the UK? Have your say by submitting your comments to the MLD consultation
24th July 2025
Remember to apply for your Cambridge Rare Disease Network‘This Is Me’ Rare Patient. The patient passport provides a tool to communicated your/your loved one’s rare condition to new people.
24th July 2025
The IWMD patient passport is now being rolled out to the whole of the IWMD North service for paediatric patients.
24th July 2025
Fight for Ordinary is a new campaign, setting out a positive vision for a reformed system for children and young people with special educational needs.
22nd July 2025
Our Research Summary for July 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.
21st July 2025
We have two children’s books available on our website. One for all children and one for siblings of children affected by ALD.
