Unique (@unique_charity) 's Twitter Profile
Unique

@unique_charity

Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. rarechromo.org

ID: 23050415

linkhttp://www.rarechromo.org calendar_today06-03-2009 10:17:34

4,4K Tweet

8,8K Followers

1,1K Following

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Curious about how AI can benefit genomic medicine? We are hosting a webinar with The Genomic Medicine Service on 26th of September at 2 PM. Reserve your spot here: bit.ly/AIGenomic

Curious about how AI can benefit genomic medicine? 

We are hosting a webinar with The Genomic Medicine Service on 26th of September at 2 PM.

Reserve your spot here: bit.ly/AIGenomic
Unique (@unique_charity) 's Twitter Profile Photo

Regular Donations Make a Huge Impact! To set up a regular donation head to rarechromo.org/donate/ Every contribution counts, no matter the size. ๐Ÿ™ #CharitySupport #RareChromo #genedisorder #MakeADifference #SupportFamilies #MonthlyDonations #unique

Regular Donations Make a Huge Impact!

To set up a regular donation head to rarechromo.org/donate/ 

Every contribution counts, no matter the size. ๐Ÿ™

#CharitySupport #RareChromo #genedisorder #MakeADifference #SupportFamilies #MonthlyDonations #unique
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A BIG THANK YOU to Genomic Counselling Trainee Ilektra Vasiloudis and colleagues in the Clinical Genetics Dept Bham Children's Hosp ๐Ÿ’™ Ilektra arranged a "skip your lunch", cooking lots of Greek food & treats for her colleagues to raise funds for Unique #geneticcounselling

A BIG THANK YOU to Genomic Counselling Trainee Ilektra Vasiloudis and colleagues in the Clinical Genetics Dept <a href="/Bham_Childrens/">Bham Children's Hosp ๐Ÿ’™</a>  Ilektra arranged a "skip your lunch", cooking lots of Greek food &amp; treats for her colleagues to raise funds for <a href="/Unique_charity/">Unique</a> #geneticcounselling
Unique (@unique_charity) 's Twitter Profile Photo

Today is TBR1-Related Disorder Awareness Day! Spread awareness to promote understanding and support those affected. Share this post and visit our website to read our guide on TBR1-Related Disorder. ๐Ÿ”— bit.ly/TBR1-RD

Today is TBR1-Related Disorder Awareness Day!

Spread awareness to promote understanding and support those affected. 

Share this post and visit our website to read our guide on TBR1-Related Disorder.

๐Ÿ”— bit.ly/TBR1-RD
Unique (@unique_charity) 's Twitter Profile Photo

September is STXBP1-Related Disorders Awareness Month! ๐Ÿงฌ Help raise awareness by sharing this post and visit our website to read our detailed guide on STXBP1-related disorders. ๐Ÿ”—: bit.ly/stxbp1 #STXBP1Awareness #STXBP1

September is STXBP1-Related Disorders Awareness Month! ๐Ÿงฌ 

Help raise awareness by sharing this post and visit our website to read our detailed guide on STXBP1-related disorders. 

๐Ÿ”—: bit.ly/stxbp1

#STXBP1Awareness #STXBP1
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New 'BBSOAS' Guide! ๐Ÿงฌ Weโ€™ve just released a guide on Bosch-Boonstra-Schaaf Optic Atrophy Syndrome. Compiled by Jennifer Coughlin & Anna Pelling, reviewed by Dr. Sarah Poliquin. 'Easy Read' & 'My Gene Story' versions available too! Full Guide: bit.ly/BBSOAS

New 'BBSOAS' Guide! ๐Ÿงฌ

Weโ€™ve just released a guide on Bosch-Boonstra-Schaaf Optic Atrophy Syndrome.

Compiled by Jennifer Coughlin &amp; Anna Pelling, reviewed by Dr. Sarah Poliquin.

'Easy Read' &amp; 'My Gene Story' versions available too!   

Full Guide: bit.ly/BBSOAS
Unique (@unique_charity) 's Twitter Profile Photo

Join Us for the Worldโ€™s First Q&A on RNU4-2/ReNU Syndrome! If a loved one is impacted by a change in the RNU4-2 gene, donโ€™t miss this webinar. ๐Ÿ“… Date: 10th October 2024 ๐Ÿ•’ Time: 2:30pm BST ๐Ÿ”— Register here: bit.ly/RNU4-2 #Webinar #RareDisease #RNU42

Join Us for the Worldโ€™s First Q&amp;A on RNU4-2/ReNU Syndrome! 

If a loved one is impacted by a change in the RNU4-2 gene, donโ€™t miss this webinar.

๐Ÿ“… Date: 10th October 2024
๐Ÿ•’ Time: 2:30pm BST

๐Ÿ”— Register here: bit.ly/RNU4-2

#Webinar #RareDisease #RNU42
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Today is International 9p Minus Awareness Day! ๐Ÿ’™๐ŸŒ A day to raise awareness for 9p minus syndrome and its impact. We offer free Information Guides to specific chromosome and gene disorders including those affecting chromosome 9 like 9p Minus. Head to bit.ly/alluniqueguides

Today is International 9p Minus Awareness Day! ๐Ÿ’™๐ŸŒ

A day to raise awareness for 9p minus syndrome and its impact.

We offer free Information Guides to specific chromosome and gene disorders including those affecting chromosome 9 like 9p Minus. Head to bit.ly/alluniqueguides
Genomics England (@genomicsengland) 's Twitter Profile Photo

The Participant Panel are recruiting for a Chair and new members. Get in touch to apply and help champion participantsโ€™ interests. Applications for the Chair role close 30 September, and applications for member roles close 11 October. ow.ly/mFjw50SS8o0

The Participant Panel are recruiting for a Chair and new members.

Get in touch to apply and help champion participantsโ€™ interests. 

Applications for the Chair role close 30 September, and applications for member roles close 11 October.

ow.ly/mFjw50SS8o0
Karen Low (@drkarenlow) 's Twitter Profile Photo

Our sign up page is back up and running - thanks for your patience! Lots of space still remaining to join our efforts to improve genetic neurodevelopmental research

Our sign up page is back up and running - thanks for your patience! Lots of space still remaining to join our efforts to improve genetic neurodevelopmental research
NHS East Genomics (@east_genomics) 's Twitter Profile Photo

This Sunday 100s of UK genetic professionals are getting on their bikes to raise money for Unique and SWAN UK (syndromes without a name) who support families with rare genetic conditions. ๐Ÿšดโ€โ™€๏ธ๐Ÿšดโ€โ™‚๏ธ Details of Nottingham & Cambridge rides here, as well as how you can support: eastgenomics.nhs.uk/about-us/news-โ€ฆ

This Sunday 100s of UK genetic professionals are getting on their bikes to raise money for <a href="/Unique_charity/">Unique</a>  and <a href="/SWAN_UK/">SWAN UK (syndromes without a name)</a> who support families with rare genetic conditions. ๐Ÿšดโ€โ™€๏ธ๐Ÿšดโ€โ™‚๏ธ

Details of Nottingham &amp; Cambridge rides here, as well as how you can support: eastgenomics.nhs.uk/about-us/news-โ€ฆ
Unique (@unique_charity) 's Twitter Profile Photo

A Huge Thank You to Our 'Ride for Rare' participants and Supporters! ๐Ÿšฒ ๐Ÿ๏ธ We at Unique are incredibly grateful to everyone participating in, or donating to, Ride for Rare this Sunday! ๐Ÿ’™๐Ÿ’› To donate head to: bit.ly/Ride4rare

A Huge Thank You to Our 'Ride for Rare' participants and Supporters! ๐Ÿšฒ ๐Ÿ๏ธ

We at Unique are incredibly grateful to everyone participating in, or donating to, Ride for Rare this Sunday! ๐Ÿ’™๐Ÿ’›

To donate head to: bit.ly/Ride4rare
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Call for Volunteers! Have you or a loved one experienced genomic testing? A research team from the University of Oxford would love to hear your story... To find out more about the study please email Kate Lyle ([email protected]).

Call for Volunteers! 

Have you or a loved one experienced genomic testing? A research team from the University of Oxford would love to hear your story...

To find out more about the study please email Kate Lyle (kate.lyle@well.ox.ac.uk).
Unique (@unique_charity) 's Twitter Profile Photo

Today is MPPH Syndrome Awareness Day! ๐Ÿ’™ โœจ Find our guide to the syndrome here: bit.ly/MPPHGuide #MPPHAwareness #RareGene #SupportAndAwareness #GeneticDisorders #TogetherWeAreStronger #MPPHSyndrome #Unique #RareChromo

Today is MPPH Syndrome Awareness Day! ๐Ÿ’™ โœจ

Find our guide to the syndrome here: bit.ly/MPPHGuide

#MPPHAwareness #RareGene #SupportAndAwareness #GeneticDisorders #TogetherWeAreStronger #MPPHSyndrome #Unique #RareChromo
Unique (@unique_charity) 's Twitter Profile Photo

Submit your story to #Uniqueโ€™s 100th Magazine Edition! ๐ŸŽ‰ Share your #rarechromo or #genedisorder journey. Email around 700 words and a high-quality image to Sarah at [email protected] with "Magazine article" as the subject. โณDeadline: Friday, 28th September

Submit your story to #Uniqueโ€™s 100th Magazine Edition! ๐ŸŽ‰

Share your #rarechromo or #genedisorder journey. Email around 700 words and a high-quality image to Sarah at sarah@rarechromo.org with "Magazine article" as the subject.

โณDeadline: Friday, 28th September