Leukodystrophy Support | HealthUnlocked

Leukodystrophy Support

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Welcome to our Online Community

A warm welcome to all those just joining our Leukodystrophy Support Group 🤗 Ple...

Upcoming Beneficiary Events

There are two upcoming beneficiary events being held on zoom. On May 18th 11:30...

Join our existing Steering Group 🗣️💬

The Steering Group provides valuable feedback on our resources and projects. We...

Changes to Covid-19 Booster Guidelines and Covid Testing

There have been changes to the Covid Booster Guidelines and Covid Testing. We ha...

CCALD Study....Questions?

We are still looking for parents to be part of our CCALD study. Without your hel...

Impact Survey.....Your Questions Answered

What is it? The survey is an online questionnaire which asks about different top...

Upcoming Beneficiary Events & what you’d like to see offered?

We have two upcoming beneficiary events:- - On Thursday 31st March from 11:00-12...

Digital Community Weekend Content Available to View

The content from our Digital Community Weekend 2021 is available to access on ou...

Have your say about the Alex TLC website

We are reviewing our website and we'd love to hear about your experiences using ...

Alex TLC Impact Survey

Please complete our Impact Survey 2022! Your feedback really matters to us and w...

Talking Point: How do you like to communicate and network with other affected individuals?

We'd be interested in finding out from YOU how you like to communicate and netwo...

Rare Disease Day 2022...how to get involved!

It is Rare Disease Day on Monday 28th February. This year’s theme is #LightUpFor...

Externally-Led Patient-Focused Drug Development meeting (EL-PFDD)

We are thrilled to announce that we will be hosting an Externally-Led Patient-Fo...

Future Beneficiary Events...What do you want to see offered?

We are currently in the process of planning our beneficiary events for 2022. We ...

Progress Educational Trust (PET) Webinars

The Progress Educational Trust (PET) are holding a series of informative webinar...

Alex TLC Counselling Grants

Please complete our poll on Health Unlocked! We are asking you 'We are hoping to...

Be a part of the first official study exploring the true impact of Childhood Cerebral ALD

Alex TLC are working with Sheffield Hallam University to publish a paper demonst...

Join the ALSP Registry study!

The study is being conducted so researchers can learn more about ALSP, and the e...

Research Opportunity: Parents of Children with CCALD

Researchers from Sheffield Hallam University are conducting research in collabor...

We need your feedback...please complete our IWMD poll on Leukodystrophy Support!

Many of you might be aware of the new NHS England Inherited White Matter Disorde...

Community Weekend Content & Feedback

We hope you all enjoyed our Digital Community Weekend in November! For those who...

12 Days of Christmas Awareness Campaign

We are looking for 12 individuals or families who would like to share their leuk...

3 days until....our Digital Community Weekend!

We are looking forward to seeing you all at our Digital Community Weekend in les...

Trainers/Sneakers wearing an AFO

Hi All Hope everyone is well. Owing to my AMN, I have to walk with an AFO on my ...

Alex TLC Design a Christmas E-card Competition

Join us for some festive fun and enter our competition to design a Christmas E-c...

Community Weekend: Children's Activities

Our digital community weekend is for the whole family and that is why we have tw...

Alex TLC Digital Community Weekend

The agenda for our weekend is available to view: https://www.alextlc.org/digital...

Gene Therapy Trials openly recruiting: GM1 gangliosidosis & Krabbe Disease

Passage Bio are recruiting to two gene therapy trials: - Early onset and late on...

Digital Community Weekend Agenda

You can now view the agenda for our digital community weekend: https://www.alext...

Alex TLC Upcoming Beneficiary Events, including our Digital Community Weekend

Below are our upcoming beneficiary events for the next couple of months. If you ...
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About us

Welcome to Leukodystrophy Support, an online support community for anyone that is affected, directly or indire...

Read more about Leukodystrophy Support
020 7701 4388