23rd April 2024
Dads group
We are thinking of holding a regular online Dads group for individuals with children affected by leukodystrophy. We wanted to find out if this was something you’d like us to offer.
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.
23rd April 2024
We are thinking of holding a regular online Dads group for individuals with children affected by leukodystrophy. We wanted to find out if this was something you’d like us to offer.
18th April 2024
Be part of our focus group to discuss Health Data Research UK’s (HDR UK) draft Patient and Public Involvement and Engagement (PPIE) Strategy for 2024-2028. We are looking for family members and carers of individuals affected by leukodystrophy to get involved.
18th April 2024
SHCA has published the findings of their recent member survey on mental health needs of people living with a rare or complex condition. Our support is available for affected individuals and their family members/carers.
18th April 2024
Ionis has activated the first clinical trial sites for ORBIT, our Phase 1 clinical trial of an investigational drug, ION356, in people with Pelizaeus-Merzbacher Disease (PMD).
17th April 2024
Our poster on the NHS England Inherited White Matter Disorders (Leukodystrophy) Patient Service and Registry has been accepted for the ECRD 2024. Our poster demonstrates the value of patient voice representation in the development and implementation of a new health service and registry.
17th April 2024
A community member has developed a survey for college about how accessible hospitals are for the disabled. Can you help by completing their quick online survey?