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Leukodystrophy
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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 now have 54 members who have joined 💫 A space for individuals affected by
leukodystrophy
and their family members, friends, and carers to have conversations Come and join the group by visiting: https://www.facebook.com
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
leukodystrophy
and their family members, friends, and carers to have conversations Come and join the group by visiting: https://www.facebook.com
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Leukodystrophy Support
2 years ago
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 having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.
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 having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.
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Leukodystrophy Support
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 that having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.
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 that having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.
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Leukodystrophy Support
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 exciting news, we have created our own Facebook Group called ‘Alex TLC Community’.
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 exciting news, we have created our own Facebook Group called ‘Alex TLC Community’.
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Leukodystrophy Support
2 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 everyone in our community 👋 Comment on our existing posts or write your own posts and questions 💬 If you have any questions, please feel free
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 everyone in our community 👋 Comment on our existing posts or write your own posts and questions 💬 If you have any questions, please feel free
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Leukodystrophy Support
2 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 welcome to join. If you would like some further information or have any questions, then please contact suzanne@alextlc.org
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 welcome to join. If you would like some further information or have any questions, then please contact suzanne@alextlc.org
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Leukodystrophy Support
2 years ago
Alex TLC General Catch Up: Men with Symptoms
Hi All, We have a general catch up tomorrow, Wednesday 20th April, from 18:00-19:00 for men with mild symptoms of
Leukodystrophy
. This will be held on Zoom in a group setting with other Alex TLC beneficiaries.
Hi All, We have a general catch up tomorrow, Wednesday 20th April, from 18:00-19:00 for men with mild symptoms of
Leukodystrophy
. This will be held on Zoom in a group setting with other Alex TLC beneficiaries.
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AMN EASIER
2 years ago
Alex TLC Counselling Grants
We are asking you 'We are hoping to offer grants to help individuals and families affected by
Leukodystrophy
to access counselling. Would you be interested?'
We are asking you 'We are hoping to offer grants to help individuals and families affected by
Leukodystrophy
to access counselling. Would you be interested?'
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Leukodystrophy Support
3 years ago
Metachromatic leukodystrophy and the world's most expensive drug.
The drug, Libmeldy, [i]from WIkipedia[/i]: https://en.wikipedia.org/wiki/Atidarsagene_autotemcel "Atidarsagene autotemcel, sold under the brand name Libmeldy, is a gene therapy treatment for metachromatic
leukodystrophy
(MLD) developed by Orchard Therapeutics.
The drug, Libmeldy, [i]from WIkipedia[/i]: https://en.wikipedia.org/wiki/Atidarsagene_autotemcel "Atidarsagene autotemcel, sold under the brand name Libmeldy, is a gene therapy treatment for metachromatic
leukodystrophy
(MLD) developed by Orchard Therapeutics.
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AMN EASIER
3 years ago
HELP!!
I have a VUS for vascular disease of white matter in brain associated with a very rare
leukodystrophy
, written off to age(64), which I contend would have been there 30 years ago had I had a brain scan then. So, I believe central hypo is feasible, both by test results and family history.
I have a VUS for vascular disease of white matter in brain associated with a very rare
leukodystrophy
, written off to age(64), which I contend would have been there 30 years ago had I had a brain scan then. So, I believe central hypo is feasible, both by test results and family history.
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Thyroid UK
2 years ago
12 Days of Christmas Awareness Campaign
We are looking for 12 individuals or families who would like to share their
leukodystrophy
story, and the impact it has over the festive period. Your stories will be shared on social media as part of our 12 days of Christmas awareness campaign in December.
We are looking for 12 individuals or families who would like to share their
leukodystrophy
story, and the impact it has over the festive period. Your stories will be shared on social media as part of our 12 days of Christmas awareness campaign in December.
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Leukodystrophy Support
3 years ago
We need your feedback...please complete our IWMD poll on Leukodystrophy Support!
Please take a minute to complete our poll on
Leukodystrophy
Support and let us know, your feedback is important in shaping how the registry will work. For any questions or further information, please contact suzanne@alextlc.org
Please take a minute to complete our poll on
Leukodystrophy
Support and let us know, your feedback is important in shaping how the registry will work. For any questions or further information, please contact suzanne@alextlc.org
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Leukodystrophy Support
3 years ago
September is #LeukodystrophyAwareness #turnseptemberblue Month
September is
Leukodystrophy
Awareness month. Our aims during this month are to spread awareness of the different types of
Leukodystrophy
and reach new affected individuals and their families.
September is
Leukodystrophy
Awareness month. Our aims during this month are to spread awareness of the different types of
Leukodystrophy
and reach new affected individuals and their families.
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Leukodystrophy Support
3 years ago
Alex TLC Upcoming Beneficiary Events, including our Digital Community Weekend
Please be aware that this meeting may have parents with children who have a variety of symptoms and some with more advanced symptoms of
leukodystrophy
than others.
Please be aware that this meeting may have parents with children who have a variety of symptoms and some with more advanced symptoms of
leukodystrophy
than others.
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Leukodystrophy Support
3 years ago
Have you or a family member recently been diagnosed with a genetic leukodystrophy?
Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of
Leukodystrophy
: Conditions - Alex - The
Leukodystrophy
Charity (alextlc.org) They also provide support and advice to individuals affected by a
Leukodystrophy
and their families.
Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of
Leukodystrophy
: Conditions - Alex - The
Leukodystrophy
Charity (alextlc.org) They also provide support and advice to individuals affected by a
Leukodystrophy
and their families.
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Leukodystrophy Carriers
3 years ago
Have you or a family member recently been diagnosed with a genetic leukodystrophy?
Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of
Leukodystrophy
: Conditions - Alex - The
Leukodystrophy
Charity (alextlc.org) They also provide support and advice to individuals affected by a
Leukodystrophy
and their families.
Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of
Leukodystrophy
: Conditions - Alex - The
Leukodystrophy
Charity (alextlc.org) They also provide support and advice to individuals affected by a
Leukodystrophy
and their families.
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Leukodystrophy Support
3 years ago
United Leukodystrophy Foundation AMN/ALD Conference on YouTube
The ULF just posted a recording of the ALD/AMN portion of their yearly conference. Lots of good presentations on various topics. Detailed results of the MIN-102/Leriglitazone trial start at timestamp 55:00 https://www.youtube.com/watch?v=G8BgkKi2JS8&t=4417s
The ULF just posted a recording of the ALD/AMN portion of their yearly conference. Lots of good presentations on various topics. Detailed results of the MIN-102/Leriglitazone trial start at timestamp 55:00 https://www.youtube.com/watch?v=G8BgkKi2JS8&t=4417s
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AMN EASIER
3 years ago
Alex TLC Digital Community Weekend: 20th - 21st November 2021
The Alex TLC Digital Community Weekend brings together
leukodystrophy
sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
The Alex TLC Digital Community Weekend brings together
leukodystrophy
sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
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Leukodystrophy Support
3 years ago
Alex TLC Digital Community Weekend: 20th - 21st November 2021
The Alex TLC Digital Community Weekend brings together
leukodystrophy
sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
The Alex TLC Digital Community Weekend brings together
leukodystrophy
sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
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Leukodystrophy Carriers
3 years ago
Alex TLC Steering Group
We are looking for individuals who are affected by a
Leukodystrophy
, or carer for/partner of someone who is affected.
We are looking for individuals who are affected by a
Leukodystrophy
, or carer for/partner of someone who is affected.
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Leukodystrophy Carriers
3 years ago
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