30th March 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
30th March 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.
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.
10th March 2026
Ask our community provides an opportunity to ask our community members for information, suggestions, recommendations, or feedback about their experiences.
3rd March 2026
We attended the Society for Endocrinology – British Endocrinology Society (SfE BES) conference.
3rd March 2026
Our next online meeting will be taking place on Thursday 26th March 11:30-13:00 (GMT – UK time).
25th February 2026
Our CEO, Sara, attended the Rare Disease Day 2026 Westminster Parliamentary Reception on 24th February.
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.
16th February 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.
5th February 2026
Our Director of Support, Karen, is attended the Specialised Healthcare Alliance (SHCA) quarterly meeting in Millbank House on the Parliamentary Estate.
5th February 2026
Our next online meeting will be taking place on Wednesday 25th February 11:30-13:00 (GMT – UK time).
30th January 2026
Our Director of Support, Karen, and Research Analyst, Kristina, attended the BPNA annual conference. We had a stand at the event, presented a poster and presented as part of a special interest group.