29th July 2025
News Round-Up
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.
Stay up to date
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.
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.
16th July 2025
Share your experience of care packages and accessing health services with CQC. They are seeking to learn more about both the bad and good experiences that disabled people have.
16th July 2025
End AxD have launched a section on their website that breaks down the Patient-Focused Drug Development (PFDD) process and what it means for families living with Alexander Disease.
14th July 2025
Screen4Care has launched a recruitment for newborn screening in Ferrara, Italy and in Dijon, France – the conditions include ALD and MLD.
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.
19th June 2025
Chiesi Group and Key2Brain announce worldwide license agreement to advance the development of therapies – including Krabbe disease.
19th June 2025
SynaptixBio, which is developing a therapy for H-ABC (Hypomyelination with atrophy of the basal ganglia and cerebellum) leukodystrophy, says it has identified the drug it will take forward into clinical trials.
10th June 2025
A South East Technological University (SETU) research team has secured significant international funding for its work in gene therapy for Canavan disease.
5th June 2025
30th May 2025
Our May 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.