Alex, The Leukodystrophy Charity
The only charity in the UK which provides information and invaluable support to anyone affected by leukodystrophy.
Alex, The Leukodystrophy Charity
Established in 2004, Alex TLC is an internationally recognised centre of excellence for those affected by a Leukodystrophy. We are the only charity in the UK that provides invaluable support for anyone with a Leukodystrophy, their families, and carers.
Our aims
Enable more patients, families and carers to access vital support and information
Connect patients and families to others living with Leukodystrophy
Raise awareness and improve public and professional education through events and campaigns
Promote research to find better treatments, enable early diagnosis and increase life expectancy
Your Impact
Our support services are designed to help individuals and families better cope with the unimaginable life changes that come with a leukodystrophy diagnosis.
We promote the social and emotional well-being of our beneficiaries by tackling loneliness, addressing mental health challenges, and fostering community connections.
We address the knowledge gap by providing high quality condition related information and resources for both our beneficiaries and health professionals.
Our ongoing support extends to the entire family, loved ones, and caregivers, because we know from experience that it's not just the affected person who needs support.
Our support is available in-person at home, by phone, and online, ensuring everyone can access the necessary help for managing their condition.
£10
distribution of vital information to someone newly diagnosed with a leukodystrophy
£50
two hours of one to one telephone or zoom support
£100
a dedicated support session at home to address fears, concerns and questions from the whole family