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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.

7th August 2023

Leukodystrophy Awareness Month

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. It provides an opportunity to raise awareness of leukodystrophy, including the symptoms of leukodystrophy, the impact of the condition on individuals and […]

21st July 2023

Screen Our Boys Campaign

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

Developing support resources for children and young people

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 […]