14th March 2024
England Rare Diseases Action Plan 2024
The England Rare Diseases Action Plan 2024 has been released. It builds on the action plans from 2022 and 2023 and discusses the four key priorities for this upcoming year.
Helping to cope, helping to hope
Established in 2004, Alex TLC provides invaluable support and information to people affected by leukodystrophy.
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 for all those with 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.
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.
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.
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.
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.
14th March 2024
The England Rare Diseases Action Plan 2024 has been released. It builds on the action plans from 2022 and 2023 and discusses the four key priorities for this upcoming year.
14th March 2024
Alexander Disease Research Project produces monthly podcasts. They have released episode 19 which is discussing the connections between Alexander disease and Giant Axonal Neuropathy.
13th March 2024
Wellchild awards provide an opportunity to recognise inspirational children and young people with complex medical needs, siblings, parent carers and professionals. The nominations are currently open.
13th March 2024
Join us tomorrow for our monthly online community meeting. Everyone is welcome to join these meetings – they provide an opportunity for our community to come together and share experiences.
12th March 2024
Evenbreak are a new career support service. They provide relevant and accessible careers support for disabled candidates looking for new or better work, delivered by careers professionals with lived experience of disability.
11th March 2024
Maureen’s grandson, Toby, has been living with Adrenoleukodystrophy (ALD) for 10 years now. Because of this, Maureen has decided to hold an Auction of her work and donate all proceeds to Alex TLC.