We undertake campaigns to improve the quality of, and access to, treatments for leukodystrophy. This includes our Screen Our Boys Campaign, which petitions for Adrenoleukodystrophy (ALD) to be added to the UK newborn screening programme. We also use campaigns to raise awareness of leukodystrophies and the impact they have on individuals and families. Our projects focus on the development of new resources for those affected by leukodystrophy. This includes the development of accurate condition information resources and our children’s book.
9th June 2026
There are several conditions that cause dementia in children, including many leukodystrophies. Initiated in Australia, this initiative aims to provide a published global consensus on the definition of childhood dementia. We are a Patient Group Partner for the Childhood Dementia Initiative and are committed to supporting the project’s vision and outcomes.
27th January 2026
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
16th January 2026
Our annual Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
1st September 2025
Our ‘Life with leukodystrophy’ page is dedicated to sharing the journeys of individuals and families affected by leukodystrophy. With an aim to shine a light on the far-reaching impact of leukodystrophy and the challenges faced by our community members.
7th August 2023
Leukodystrophy Awareness Month takes place every year throughout the whole of September. It is a time for everyone affected by a leukodystrophy to come together and raise awareness about these devastating rare conditions.
21st July 2023
Help get ALD added to the UK’s Newborn Screening Programme End young deaths from Adrenoleukodystrophy (ALD) We are campaigning for Adrenoleukodystrophy (ALD) to be added to the UK Newborn Screening Programme. ALD is a rare, devastating terminal genetic condition. Without early diagnosis, treatment is often too late, leaving young boys in a vegetative state with […]
26th October 2022
There is a distinct lack of support resources for children and young people who are impacted by leukodystrophy, either being affected themselves or with an affected family member. The support available is often focused on parents and carers, which is why we are developing support resources for children and young people. Our Children’s book for […]
