11th July 2025
Newborn screening policy report
Genetic Alliance UK have released a new policy report ‘Time to Decide: Learning from international approaches to newborn screening decision-making’.
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11th July 2025
Genetic Alliance UK have released a new policy report ‘Time to Decide: Learning from international approaches to newborn screening decision-making’.
9th July 2025
3rd July 2025
Personal stories of leukodystrophy are the best way to raise awareness of these life altering conditions. If you live close to a Light Up Blue location, and would like to share your story to help spread the word about leukodystrophy and Alex TLC, please contact your local newspaper.
3rd July 2025
Our Ask our Community for July is struggling with redness caused by the heat. We have parents who are asking for advice about their 10 year old son.
3rd July 2025
Our next online community meeting will be taking place on Monday 21st July 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.
3rd July 2025
We are looking for new members to join our charity steering group. We only ask that members commit to an hour online meeting every other month.
3rd July 2025
We currently have 22 locations lighting up blue in September for Leukodystrophy Awareness Month.
30th June 2025
Our June 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.
30th June 2025
Our Research Summary for June 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.
20th June 2025
We are pleased to introduce our new counsellor, Jas. Jas will be offering free counselling sessions to adult community members, including both affected individuals and family members.
20th June 2025
International Neonatal Screening Day takes place on 28th June each year. The day is an opportunity to raise awareness of the vital need for newborn screening worldwide. Since last year we’ve been involved in lots of newborn screening activities in the charity.
19th June 2025
Chiesi Group and Key2Brain announce worldwide license agreement to advance the development of therapies – including Krabbe disease.