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
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Regular Donations Make a Huge Impact! To set up a regular donation head to rarechromo.org/donate/ Every contribution counts, no matter the size. πŸ™ #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. πŸ™

#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 πŸ’™ 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 πŸ’™</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
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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. πŸ”— 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.

πŸ”— bit.ly/TBR1-RD
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September is STXBP1-Related Disorders Awareness Month! 🧬 Help raise awareness by sharing this post and visit our website to read our detailed guide on STXBP1-related disorders. πŸ”—: bit.ly/stxbp1 #STXBP1Awareness #STXBP1

September is STXBP1-Related Disorders Awareness Month! 🧬 

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

πŸ”—: bit.ly/stxbp1

#STXBP1Awareness #STXBP1
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New 'BBSOAS' Guide! 🧬 We’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! 🧬

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

Join Us for the World’s First Q&amp;A on RNU4-2/ReNU Syndrome! 

If a loved one is impacted by a change in the RNU4-2 gene, don’t miss this webinar.

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

πŸ”— Register here: bit.ly/RNU4-2

#Webinar #RareDisease #RNU42
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Today is International 9p Minus Awareness Day! πŸ’™πŸŒ 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! πŸ’™πŸŒ

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 participants’ 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 participants’ 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. πŸš΄β€β™€οΈπŸš΄β€β™‚οΈ Details of Nottingham & Cambridge rides here, as well as how you can support: eastgenomics.nhs.uk/about-us/news-…

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. πŸš΄β€β™€οΈπŸš΄β€β™‚οΈ

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

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

A Huge Thank You to Our 'Ride for Rare' participants and Supporters! 🚲 🏍️

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

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! πŸ’™ ✨ Find our guide to the syndrome here: bit.ly/MPPHGuide #MPPHAwareness #RareGene #SupportAndAwareness #GeneticDisorders #TogetherWeAreStronger #MPPHSyndrome #Unique #RareChromo

Today is MPPH Syndrome Awareness Day! πŸ’™ ✨

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 #Unique’s 100th Magazine Edition! πŸŽ‰ 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. ⏳Deadline: Friday, 28th September

Submit your story to #Unique’s 100th Magazine Edition! πŸŽ‰

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.

⏳Deadline: Friday, 28th September