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Helping to cope, helping to hope

For everyone affected by leukodystrophy

We are Alex, The Leukodystrophy Charity (Alex TLC)

Established in 2004, Alex TLC provides invaluable support and information to people affected by leukodystrophy.

Formerly ALD Life, for people affected by adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN), we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.

There are more than 100 different known types of leukodystrophy, including some so rare they only affect one or two individuals. We are the only charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide.

About Us

What is leukodystrophy?

Leukodystrophies are genetic disorders primarily affecting the white matter of the central nervous system (ie. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may be life limiting. These conditions affect males and females of all ages and ethnic backgrounds, most notably children.

Learn more about leukodystrophy

Making a difference to our community

We are proud of the information and support we provide to our community members.

Over a year period we provide:

  • one to one support to over 380 individuals and family members
  • over 200 counselling sessions to our community members
  • monthly online community meetings to over 75 community members

We hold an annual Community Weekend and our 2024 event was attended by over 180 community members and professionals.

Our website is an important resource for individuals affected by leukodystrophy and professionals. Over a year period we have over 49,900 visits to our website, with our condition pages being the most popular pages receiving over 17,500 visits.

Newly diagnosed

Have you or a family member been diagnosed with a leukodystrophy?

We understand the information you have received may be new and confusing, and it may be difficult to know where to go for further advice and information.

Support for newly diagnosed

Information and support

NHS England Inherited White Matter Disorders (Leukodystrophy) Patient Service and Registry

The new NHS England IWMD Diagnostic and Management Service is for all ages. It strives to implement national standards of care for patients with an IWMD (leukodystrophy) and improve the NHS’s understanding of care for these conditions.

We are the patient organisation representative for the service and registry. We are working alongside NHS professionals, including consultants and nurses, to support the development of these services. We attend clinics to provide information and support to individuals and family members.

Further information

Give Up to Give Back in 2026

Looking for a new challenge? Planning to lead a healthier lifestyle? Just want to do something for charity? If so, Alex TLC’s Give Up to Give Back campaign could be just the thing for you!

Find out more

Get Involved

You can help us to raise vital funds and increase awareness of leukodystrophies.

The majority of people aren’t aware of these rare diseases and their impact on individuals and their families. With your help, however small, we can make a real difference.

These pages are packed full of ideas and inspiration for the various ways you and/or your organisation can get involved and lend your support.

Discover how you can get involved today.

Get Involved

Ways you can support us

Latest News

We are constantly updating our news section with everything of interest to people affected by leukodystrophies.

You’ll find information about our latest work, health and research news, updates for professionals, and more.

04th March 2026

PET metabolic diseases event recording

Watch a recording of a PET event discussing how to improve diagnosis, treatment and support for people affected by rare and inherited metabolic diseases.

03rd March 2026

SfE BES Conference 2026

We attended the Society for Endocrinology – British Endocrinology Society (SfE BES) conference.

03rd March 2026

Online community meeting

Our next online meeting will be taking place on Thursday 26th March 11:30-13:00 (GMT – UK time).

27th February 2026

Equity for rare illustration

View a rare disease day focused illustration showing what equity means to individuals affected by rare disease.

26th February 2026

Equity for rare policy report

Genetic Alliance UK’s Rare Disease Day policy report presents the findings from our community consultation into what healthcare equity means for people living with rare conditions.