Leukodystrophy Support | HealthUnlocked

The Leukodystrophy Support group will be closing on 31st December 2022. We have created our own Facebook Group called ‘Alex TLC Community’. We hope that...

It's great to see our incredible community connecting in our online group 💙 We now have 54 members who have joined 💫 A space for individuals affected by...

The Leukodystrophy Support group will be closing on Saturday 31st December 2022. We have created our own Facebook Group called ‘Alex TLC Community’. We hope...

We are sad to announce that on Saturday 31st December 2022 we will be closing the Leukodystrophy Support group on Health Unlocked. However, we have some...

We want to know from you....what community events would you like to see Alex TLC offer? IN PERSON The last couple of years have made it difficult to meet in...

There are two opportunities to be involved in research that we would like to share with you. ALEX TLC NEWBORN ALD SCREENING STUDY Are you a man aged 16 and...

What do you do if you're having a difficult day (either mentally or physically)? Are there certain things that help? Have you learnt strategies for coping?...

Join Karen and Suzanne from Alex TLC on Tuesday June 21st 13:00-14:00 for a community call on zoom💙 Please be aware that carers and family members are also...

Mental Health Awareness week was from Monday 9th to Sunday 15th May. The theme was loneliness; raising awareness of the impact on our mental health and...

A warm welcome to all those just joining our Leukodystrophy Support Group 🤗 Please feel free to introduce yourself in the comments below and say hello to...

There are two upcoming beneficiary events being held on zoom. On May 18th 11:30-12:30 for carers and family members of recently diagnosed children. On June...

The Steering Group provides valuable feedback on our resources and projects. We are developing new services and it would be great to have feedback from...

There have been changes to the Covid Booster Guidelines and Covid Testing. We have provided further information and relevant links on our covid-19 page. Please...

We are still looking for parents to be part of our CCALD study. Without your help we won't be able to produce meaningful results which will help to make a...

What is it? The survey is an online questionnaire which asks about different topics, including your experience using our services. The other topics include: -...

We have two upcoming beneficiary events:- - On Thursday 31st March from 11:00-12:00 we have a general catch up for parents of symptomatic children. - On...

The content from our Digital Community Weekend 2021 is available to access on our YouTube channel To access the weekend playlist, please click on the link:...

We are reviewing our website and we'd love to hear about your experiences using it and anything you think could be improved - Did you find out website easy to...

Please complete our Impact Survey 2022! Your feedback really matters to us and will help to make a difference. The deadline to complete the survey is Thursday...

We'd be interested in finding out from YOU how you like to communicate and network with other affected individuals: - could the way we use Health Unlocked be...

It is Rare Disease Day on Monday 28th February. This year’s theme is #LightUpForRare, a global chain of lights at 7pm around the World on Rare Disease Day....

We are thrilled to announce that we will be hosting an Externally-Led Patient-Focused Drug Development meeting (EL-PFDD) on July 22, 2022. Our proposed target...

We are currently in the process of planning our beneficiary events for 2022. We want to find out from you, what you would like from future beneficiary events....

The Progress Educational Trust (PET) are holding a series of informative webinars about the human genome, fertility treatments and whole genome sequencing...

Please complete our poll on Health Unlocked! We are asking you 'We are hoping to offer grants to help individuals and families affected by Leukodystrophy to...

Alex TLC are working with Sheffield Hallam University to publish a paper demonstrating the psychosocial impact of CCALD on parents and carers. The study is a...

The study is being conducted so researchers can learn more about ALSP, and the effects of ALSP on patients’ lives and the lives of their caregivers. This will...

Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of having a child...

Many of you might be aware of the new NHS England Inherited White Matter Disorder (IWMD) Patient Registry that is being developed. We need your feedback about...

We hope you all enjoyed our Digital Community Weekend in November! For those who attended, you will receive an email through explaining how to access the...