20th May 2024
CamRARE Rare Patient Passport
We’re delighted to join the growing global network of patient groups partnering with CamRARE to bring their ‘This Is Me’ Rare Patient Passport to our community.
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.
20th May 2024
We’re delighted to join the growing global network of patient groups partnering with CamRARE to bring their ‘This Is Me’ Rare Patient Passport to our community.
17th May 2024
Join the Rare Caregivers Report Webinar on Thursday 23rd May 16:00 (BST) held by RARE Revolution Magazine in partnership with Rare Patient Voice.
15th May 2024
Please make sure to follow us on our social media channels. By following our profile it will help to ensure more people find out about Alex TLC.
15th May 2024
Researchers at the Myelin Disorders Program at Children’s National Hospital in Washington are running a study for those affected by Leukoencephalopathy with calcification and cysts (LCC) which is open to individuals worldwide.
14th May 2024
Our next Connecting Communities call co-hosted with ALD Connect will take place on Sunday 19th May from 15:00 (BST). We wanted to provide another chance for our communities to come together.
14th May 2024
Big congratulations to Heather, who won £61.50 in our first 50/50 Cash Draw! If you’d like to be in with the chance of winning a cash prize every month, you can sign up to our cash draw for as little as £1 per month.