Posts - 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 created our own Facebook Group called ‘Alex TLC Community’. We hope that...

The Leukodystrophy Support group will be closing on 31st December 2022. We have...

•2 years ago

Join our online community group on Facebook 💙

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...

It's great to see our incredible community connecting in our online group 💙 We...

•2 years ago

Reminder: Group Closing on 31.12.22

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...

The Leukodystrophy Support group will be closing on Saturday 31st December 2022....

•2 years ago

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Group Announcement: Group Closing

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 are sad to announce that on Saturday 31st December 2022 we will be closing th...

•2 years ago

Alex TLC Community Events

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...

We want to know from you....what community events would you like to see Alex TLC...

•3 years ago

Alex TLC Newborn ALD Screening Study & Risk-Feeding Study

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...

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

•3 years ago

Managing Difficult Days

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?...

What do you do if you're having a difficult day (either mentally or physically)?...

•3 years ago

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 community call on zoom💙 Please be aware that carers and family members are also...

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

•3 years ago

Mental Health Awareness Week

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...

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

•3 years ago

Welcome to our Online Community

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...

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

•3 years ago

Upcoming Beneficiary Events

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...

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

•3 years ago

Join our existing Steering Group 🗣️💬

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...

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

•3 years ago

Changes to Covid-19 Booster Guidelines and Covid Testing

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...

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

•3 years ago

CCALD Study....Questions?

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...

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

•3 years ago

Impact Survey.....Your Questions Answered

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

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

•3 years ago

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

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...

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

•3 years ago

Digital Community Weekend Content Available to View

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:...

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

•3 years ago

Have your say about the Alex TLC website

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...

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

•3 years ago

Alex TLC Impact Survey

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...

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

•3 years ago

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 network with other affected individuals: - could the way we use Health Unlocked be...

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

•3 years ago

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

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....

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

•3 years ago

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

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

•3 years ago

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

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....

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

•3 years ago

Progress Educational Trust (PET) Webinars

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

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

•3 years ago

Alex TLC Counselling Grants

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...

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

•3 years ago

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 demonstrating the psychosocial impact of CCALD on parents and carers. The study is a...

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

•3 years ago

Join the ALSP Registry study!

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...

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

•3 years ago

Research Opportunity: Parents of Children with CCALD

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

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

•3 years ago

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 Disorder (IWMD) Patient Registry that is being developed. We need your feedback about...

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

•3 years ago

Community Weekend Content & Feedback

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...

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

•3 years ago

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