Norton Street
Liverpool
L3 8LR
Leukodystrophies, Adrenoleukodystrophy (A.L.D.), Lorenzo's Oil disease, metachromatic leukodystrophy (MLD), Refsum's disease, Krabbe's disease, phenylketonuria, Canavan disease, Pelizaeus-Merzbacher disease, Alexander's disease, cerebrotendinous xanthomatosis (CTX), juvenile HD, Westphal variant, akinetic-rigid HD
Leukodystrophies are a group of rare genetic disorders, often diagnosed during childhood. There are more than 90 identified leukodystrophies.
Leukodystrophies mainly affect children and are caused by a problem in the development of the brain’s white matter.
Symptoms of leukodystrophies may include:
If you’re affected by a form of leukodystrophy, The Brain Charity can support you.
We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.
We provide practical help on all aspects of living with leukodystrophy, emotional support such as counselling, phone befriending and group therapy and social activities to people with leukodystrophy from all over the UK from our centre in Liverpool.
Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.
0151 298 2999
The symptoms of leukodystrophies vary and can be difficult for others to understand. Some leukodystrophies are also extremely rare.
This can result in the person affected by leukodystrophy and their family feeling isolated. For this reason, it is important to reach out and seek support.
Are you a carer for or relative of someone with a leukodystrophy? It’s just as important for you to look after your own physical and mental wellbeing too.
The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including leukodystrophy, from anywhere in the UK.
We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.
We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.
Are you interested in setting up a leukodystrophy support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.
Alternatively, you can check out our list of related support groups here.
Website: www.metabolicsupportuk.org
Tel: 0845 241 2173
Website: www.alextlc.org
Tel: 020 7701 4388
Email: info@alextlc.org
Website: www.mldsupportuk.org.uk
Tel: 07977 440809
Website: contact.org.uk
