Alex The Leukodystrophy Charity (Alex TLC)
Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by a genetic leukodystrophy.
Established in 2004 as ALD Life, we are an internationally recognised centre of excellence for those affected by adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN).
There are around 50 different known types of leukodystrophy, including some so rare they only affect one or two individuals. The charity changed its name in 2019 to become the only charity in the UK that provides support for all those with a genetic leukodystrophy.Disease Support Organization Last Updated: 13 May 2021
A charity to promote awareness, research and prevention of Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN). ALD Life enables sufferers of ALD and AMN worldwide a forum to come together to support and advise each other. We provide financial and emotional support as well as practical advice and updates on research innovations, as well as raising funds for research and treatments.Disease Support Organization Last Updated: 18 Mar 2020
The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.
Raises awareness and educates key healthcare professionals
Translates and disseminates information and research
Nurtures future healthcare leaders
Fosters collaboration and generates knowledge among core disciplinesDisease Support Organization Last Updated: 11 Mar 2020
The Stop ALD Foundation funds innovative new research to jump-start the process of developing new knowledge and new therapies, which must often proceed at an excruciatingly slow pace when only funded by government sources. We also work to educate the medical profession and the public about ALD, raising awareness in order to improve detection, diagnosis and treatment.Disease Support Organization Last Updated: 30 Jan 2019
The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting progress on research, treatment and prevention.Disease Support Organization Last Updated: 30 Jan 2019