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.

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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Our thanks to our wonderful Paris Marathon runners who ran for Unique on Sunday – Sam, Joe and Matt in support of Sam’s daughter Lucie who has Hao-Fountain syndrome and Sam and Ally, running for Sam’s son Josh who also has a rare chromosome disorder. We hope you had a great day!

Our thanks to our wonderful Paris Marathon runners who ran for Unique on Sunday – Sam, Joe and Matt in support of Sam’s daughter Lucie who has Hao-Fountain syndrome and Sam and Ally, running for Sam’s son Josh who also has a rare chromosome disorder. We hope you had a great day!
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A big Shout Out to Alan Morrison who is running the Boston Marathon for Unique this weekend, having taken on the challenge of running all seven major marathons that comprise the Abbotts World Marathon Majors series. Check out his story at: justgiving.com/page/alan-morr… #BostonMarathon

A big Shout Out to Alan Morrison who is running the Boston Marathon for Unique this weekend, having taken on the challenge of running all seven major marathons that comprise the Abbotts World Marathon Majors series. Check out his story at: justgiving.com/page/alan-morr…

#BostonMarathon
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Join us on Wednesday 21st May 2025 at 1pm (UK time) for a talk by Dr Hayley Crawford, Associate Professor at the University of Warwick's Mental Health and Wellbeing Unit 🧠 Register here: bit.ly/behaviourcheck… #IntellectualDisability #BehaviourSupport #ParentCarers

Join us on Wednesday 21st May 2025 at 1pm (UK time) for a talk by Dr Hayley Crawford, Associate Professor at the University of Warwick's Mental Health and Wellbeing Unit 🧠

Register here: bit.ly/behaviourcheck…

#IntellectualDisability #BehaviourSupport #ParentCarers
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Today is Tetrasomy 18p Day! We’re proud to stand with everyone affected by this rare chromosome condition — celebrating their strength, resilience, and uniqueness. #Tetrasomy18pDay #RareButMighty #UniqueCharity

Today is Tetrasomy 18p Day!

We’re proud to stand with everyone affected by this rare chromosome condition — celebrating their strength, resilience, and uniqueness.

#Tetrasomy18pDay #RareButMighty #UniqueCharity
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Best of Luck and a BIG shout out to our London Marathon 2025 runners for this coming Sunday!! Here is a lovely photo montage of them all! You can also read their lovely personal stories on their fundraising pages linked in our linktree! Thanks to you all from all of us! 😊

Best of Luck and a BIG shout out to our London Marathon 2025 runners for this coming Sunday!! Here is a lovely photo montage of them all!  You can also read their lovely personal stories on their fundraising pages linked in our linktree!  

Thanks to you all from all of us! 😊
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It's Undiagnosed Children’s Day! 🙌 🎈 Many families spend years searching for answers, living with the unknown, without a name for their child’s condition. Please consider sharing this post, taking part in a fundraiser, or donating to support SWAN UK’s work. #SWANUK

It's Undiagnosed Children’s Day! 🙌  🎈

Many families spend years searching for answers, living with the unknown, without a name for their child’s condition. Please consider sharing this post, taking part in a fundraiser, or donating to support SWAN UK’s work.

 #SWANUK
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Join us on Wednesday 21st May 2025 at 1pm (UK time) for a talk by Dr Hayley Crawford, Associate Professor at the University of Warwick's Mental Health and Wellbeing Unit 🧠 Register here: bit.ly/behaviourcheck… #IntellectualDisability #BehaviourSupport #ParentCarers

Join us on Wednesday 21st May 2025 at 1pm (UK time) for a talk by Dr Hayley Crawford, Associate Professor at the University of Warwick's Mental Health and Wellbeing Unit 🧠

Register here: bit.ly/behaviourcheck…

#IntellectualDisability #BehaviourSupport #ParentCarers
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💛 Today is Global Developmental Delay Awareness Day 💛 We're proud to stand with our members and families affected by GDD. Show your support today by wearing yellow and sharing why you care! #GDDawareness #GlobalDevelopmentalDelayDay #InvisibleDisability #UniqueCharity

💛 Today is Global Developmental Delay Awareness Day 💛

We're proud to stand with our members and families affected by GDD. Show your support today by wearing yellow and sharing why you care!

#GDDawareness #GlobalDevelopmentalDelayDay #InvisibleDisability #UniqueCharity
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Today is Cri-du-chat Awareness Day. Unique would like to extend a welcome to all those transferring from the Cri du Chat Support Group. To sign up to Unique, email our helpline team, [email protected] or complete the form on our website: rarechromo.org/join-us/

Today is Cri-du-chat Awareness Day. 

Unique would like to extend a welcome to all those transferring from the Cri du Chat Support Group. 

To sign up to Unique, email our helpline team, help@rarechromo.org or complete the form on our website: rarechromo.org/join-us/
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📢 We're hiring (again!) – Scientific Communications Officer! The Scientific Communications Officer is responsible for helping the guide production team with matters relating to new and updated information guides. ⏰ Deadline: Friday 13th June 2025 👉 ow.ly/UcaV50VOBVN

📢 We're hiring (again!) – Scientific Communications Officer!

The Scientific Communications Officer is responsible for helping the guide production team with matters relating to new and updated information guides. 

⏰ Deadline: Friday 13th June 2025
👉 ow.ly/UcaV50VOBVN
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We are calling clinicians to propose rare genetic neurodevelopmental disorders, which they will be willing to lead development of a new guide, with assistance of our generative AI model. Propose a condition by 30th May: forms.office.com/e/jziupyz04f NWGMSA Manchester Rare Conditions Centre

We are calling clinicians to propose rare genetic neurodevelopmental disorders, which they will be willing to lead development of a new guide, with assistance of our generative AI model.

Propose a condition by 30th May:
forms.office.com/e/jziupyz04f
<a href="/nwgmsa/">NWGMSA</a> <a href="/mft_iMRare/">Manchester Rare Conditions Centre</a>
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A study is taking place to learn about the experiences of South Asian parents and adult siblings in the UK with family members who have intellectual and developmental disabilities. Parents or family carer: ow.ly/FBB150VOiA7 Adult siblings: ow.ly/7hha50VOiA6

A study is taking place to learn about the experiences of South Asian parents and adult siblings in the UK with family members who have intellectual and developmental disabilities.

Parents or family carer: ow.ly/FBB150VOiA7
Adult siblings: ow.ly/7hha50VOiA6
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This #RareChromoDay (19/6) we can't wait to share the stories from our Little Red Book. You can still share your story so we can inspire others and raise awareness beyond our Little Red Book. - rarechromo.org/unique-digital… #RareDiseases #ChromosomeDisorder #GeneDisorder

This #RareChromoDay (19/6) we can't wait to share the stories from our Little Red Book. 

You can still share your story so we can inspire others and raise awareness beyond our Little Red Book. - rarechromo.org/unique-digital…

#RareDiseases #ChromosomeDisorder #GeneDisorder
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It’s only one month until #RareChromoDay! There are so many ways to get involved. Help us by fundraising, donating, sharing your story and spreading the word! Head to rarechromo.org/get-ready-for-… to find out how you can get involved this month

It’s only one month until #RareChromoDay! 

There are so many ways to get involved. Help us by fundraising, donating, sharing your story and spreading the word! Head to rarechromo.org/get-ready-for-… to find out how you can get involved this month
Unique (@unique_charity) 's Twitter Profile Photo

It's just 4 weeks until Rare Chromo Day 2025! There are hundreds of ways to get involved during the run up to the big day. Help us by fundraising, donating, sharing your story and spreading the word! 👉 Head to: rarechromo.org/get-ready-for-… to find out what we have planned!

It's just 4 weeks until Rare Chromo Day 2025!

There are hundreds of ways to get involved during the run up to the big day. Help us by fundraising, donating, sharing your story and spreading the word! 

👉 Head to: rarechromo.org/get-ready-for-… to find out what we have planned!
Unique (@unique_charity) 's Twitter Profile Photo

🚨Attention members! We are currently updating the records we hold for all our families. Please complete our form and send back to [email protected] 👉 ow.ly/ZRGw50VWm49 Can't find the time? Give us a call and we'll be on hand to help with a speedy update 01883 723356

🚨Attention members!

We are currently updating the records we hold for all our families. Please complete our form and send back to gemma@rarechromo.org 
👉 ow.ly/ZRGw50VWm49

Can't find the time? Give us a call and we'll be on hand to help with a speedy update 01883 723356
Unique (@unique_charity) 's Twitter Profile Photo

With our new brand, comes new merch! Visit our online shop to get your hands on some #trendy new merch, guaranteed to make you stand out AND raise awareness and funds for families affected by rare# chromosome and #gene disorders around the world. 🛒 unique-chromo-shop.myshopify.com

With our new brand, comes new merch!

Visit our online shop to get your hands on some #trendy new merch, guaranteed  to make you stand out AND raise awareness and funds for families affected by rare# chromosome and #gene disorders around the world.

🛒 unique-chromo-shop.myshopify.com
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Who still listens to Touch the Sky? Launched #RareChromoDay 2024, the song was co-created with our members to highlight their experiences and emotions throughout their journey. Let us know what you think! 🎵 youtu.be/Nw2G8vKqon8?si…

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❗️DEADLINE EXTENDED for our AI project. Clinicians - propose a rare genetic neurodevelopmental disorder for a new Unique information guide by 6th June 2025. Learn more via our form or get in touch with any questions: forms.office.com/pages/response…

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June is Lamb-Shaffer Syndrome Awareness Month! 🧬 Our free, expert-written guide to Lamb-Shaffer syndrome is available on our website at bit.ly/lambshaffer 🙌 Help us raise awareness by sharing this post. #LambShafferAwarenessMonth #LambShafferSyndrome #LambShaffer

June is Lamb-Shaffer Syndrome Awareness Month!

🧬 Our free, expert-written guide to Lamb-Shaffer syndrome is available on our website at  bit.ly/lambshaffer

🙌  Help us raise awareness by sharing this post. 

#LambShafferAwarenessMonth #LambShafferSyndrome #LambShaffer