Leukodystrophy Support | HealthUnlocked

Leukodystrophy Support

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Final Reminder – Group Closing 31.12.22

The Leukodystrophy Support group will be closing on 31st December 2022. We have...
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Join our online community group on Facebook 💙

It's great to see our incredible community connecting in our online group 💙 We...
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Reminder: Group Closing on 31.12.22

The Leukodystrophy Support group will be closing on Saturday 31st December 2022....
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Group Announcement: Group Closing

We are sad to announce that on Saturday 31st December 2022 we will be closing th...
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Alex TLC Community Events

We want to know from you....what community events would you like to see Alex TLC...
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Alex TLC Newborn ALD Screening Study & Risk-Feeding Study

There are two opportunities to be involved in research that we would like to sha...
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Managing Difficult Days

What do you do if you're having a difficult day (either mentally or physically)?...
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Have you recently been diagnosed with a Leukodystrophy?

Join Karen and Suzanne from Alex TLC on Tuesday June 21st 13:00-14:00 for a comm...
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Mental Health Awareness Week

Mental Health Awareness week was from Monday 9th to Sunday 15th May. The theme w...
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Welcome to our Online Community

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

There are two upcoming beneficiary events being held on zoom. On May 18th 11:30...
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Join our existing Steering Group 🗣️💬

The Steering Group provides valuable feedback on our resources and projects. We...
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Changes to Covid-19 Booster Guidelines and Covid Testing

There have been changes to the Covid Booster Guidelines and Covid Testing. We ha...
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CCALD Study....Questions?

We are still looking for parents to be part of our CCALD study. Without your hel...
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Impact Survey.....Your Questions Answered

What is it? The survey is an online questionnaire which asks about different top...
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Upcoming Beneficiary Events & what you’d like to see offered?

We have two upcoming beneficiary events:- - On Thursday 31st March from 11:00-12...
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Digital Community Weekend Content Available to View

The content from our Digital Community Weekend 2021 is available to access on ou...
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Have your say about the Alex TLC website

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

Please complete our Impact Survey 2022! Your feedback really matters to us and w...
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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...
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Rare Disease Day 2022...how to get involved!

It is Rare Disease Day on Monday 28th February. This year’s theme is #LightUpFor...
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Externally-Led Patient-Focused Drug Development meeting (EL-PFDD)

We are thrilled to announce that we will be hosting an Externally-Led Patient-Fo...
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Future Beneficiary Events...What do you want to see offered?

We are currently in the process of planning our beneficiary events for 2022. We ...
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Progress Educational Trust (PET) Webinars

The Progress Educational Trust (PET) are holding a series of informative webinar...
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Alex TLC Counselling Grants

Please complete our poll on Health Unlocked! We are asking you 'We are hoping to...
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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...
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Join the ALSP Registry study!

The study is being conducted so researchers can learn more about ALSP, and the e...
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Research Opportunity: Parents of Children with CCALD

Researchers from Sheffield Hallam University are conducting research in collabor...
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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...
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Community Weekend Content & Feedback

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