What is the biggest personal challenge for you due to having, or caring for someone, with a rare #chromosome or #gene disorder? These are all responses given when we asked in our 40th birthday survey. Let us know if they resonate with you the comments 💬

Don't forget you can now get our 2025 Christmas cards! We have 5 new designs and some of old stock available too. 🎄 Packs are £4 for 10 cards or £3.50 for the remainder of our 2024 packs. unique-chromo-shop.m...

The awareness days keep on coming, with today being #CACNA1C Awareness Day. Read Unique's quick read quide to CACNA1C on our website at rarechromo.org/disorder-gui... - you'll find it under the Single Gene Disorder Guides section. #RareDisease @cacna1c.bsky.social

Unfortunately, we are currently unable to ship our merchandise to the United States due to the new tariffs. If you have bought something since the start of the tariffs we will be in touch to refund any purchases - and we'll keep everyone updated if the situation changes.

Everyone processes receiving a diagnosis differently. This recent performance captures the impact it can have on relationships and wider family by following a conversation around a couple’s experience of a de novo (new) genetic diagnosis in their child ⏯️www.youtube.com/watc...

Our community never fails to inspire us. Cailin is a talented jewelry maker, and has bee selling her stunning creations to raise money for Unique. Isn't she talented?! Thank you Cailin for your continued support, it really means so much to us.

*Warning, post mentions Christmas - scroll on if you're not ready just yet 🎄 We are excited to have received our 2025 Christmas card delivery and they're now available our shop. Packs are £4 for 10 cards or £3.50 for the remainder of our 2024 packs. unique-chromo-shop.m...

The amazing Cailin has been fundraising for Unique by making and selling stunning jewelry and crafts. Thank you Cailin, you are incredibly talented!

Amazing and exciting progress for rare conditions and families @uniquecharity.bsky.social. By all (clinicians, researchers and patients) working together will can continue to drive forward improved diagnosis, care and treatment for all.

Researchers want to design a novel self-report sleep questionnaire and sleep diary for adolescents (aged 12-18 years) with mild-moderate intellectual disabilities. Can you help by sharing more on your child's attitude towards sleep measures: astonpsychology.eu.q...

We are super excited to introduce a few new members to the Unique team! Grace is interning for us as an Information Officer for the summer and Emily joins as a part time Information Officer from September. We're extremely excited and lucky to have such wonderful people join us.

We love sharing story's from our community around the world - it helps us all feel connected. Today we share Kai's story, told by Madison. If you relate please drop a comment below. Kai lives in Maryland, USA and has 15q13.3 #microdeletion #syndrome.

Today is Pallister-Killian Syndrome (PKS) Awareness Day! Let’s work together to raise awareness and celebrate the diversity that makes our community so special. Download our guide to PKS here: bit.ly/P-Ksyndrome #PKSAwarenessDay #RareChromosome #UniqueCharity #PKS

Today is DDX3X Awareness Day! 12th June marks the fifth annual International DDX3X Day! Share our expert-written guide, freely available online at bit.ly/3VlQ0D5 #DDX3X #RareChromo #GeneDisorder #ChromosomeX #AwarenessDay #Unique #FamilySupport

Today is International Chromosome 6 Awareness Day! 🧬 Unique offers expert written guides to over a dozen disorders related to chromosome 6. Freely available on our website at bit.ly/alluniqueguides #Chromosome6 #Chromosome6awareness #June6 #RareChromo

You may have noticed our new logo! It is now available on our shop to download and use in your awareness campaigns in the run up to #RareChromoDay 2025. Please purchase the logo via our shop at: bit.ly/UniqueLogoOffer#RareChromoDay #Unique #RareChromo #RareGene #RareChromoDay #Charity

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

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-r... to find out what we have planned!

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/j...

💛 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

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

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! 😊

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/behaviourchec... #IntellectualDisability #BehaviourSupport #ParentCarers

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: www.justgiving.com/p... #BostonMarathon

New Guide! White-Sutton syndrome (WHSUS) (POGZ-related syndrome) Read the guides here: bit.ly/WHSUSguide #WhiteSuttonSyndrome #GeneticDisorders #RareChromo

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!

📅 It’s 10 weeks today until #RareChromo Day – a day to celebrate and raise awareness about rare chromosome and gene disorders. 💙✨ #RareChromo #UniqueCharity #RareButMighty #10WeeksToGo

🧬💜 Today is Bohring-Opitz Syndrome Awareness Day 💜🧬 Help us raise awareness of Bohring-Opitz Syndrome (BOS), an extremely rare genetic condition affecting development and health. Download our guide here: https://bit.ly/BOSGuide #BOSAwarenessDay #BohringOpitzSyndrome

🌎 Today is International OCNDS Awareness Day 🌎 🔹 Join us in spreading the word! 🔹 Support research to drive progress. 🔹 Celebrate the amazing OCNDS community. 💙 Together, we can shine a light on OCNDS and create a future filled with hope. 💙 #OCNDSAwareness #CSNK2A1

Our BBSOAS Guide is Now Available in Spanish! 🇪🇸✨ Thank you to Dr. Álvaro López, HGU Santa Lucía, Cartagena for his incredible support in translating these vital resources! Find the guide here: bit.ly/SíndromeBBSOAS #BBSOAS #GenéticaRara #NR2F1 #ConcienciaciónGenética

You may remember Sisi from her Big Birthday fundraiser back in Feb? Since then, she has continued raising awareness for Unique and her daughter’s Floating Harbor Syndrome by sharing her diagnosis journey with the local press in her home town of Aberdeen: www.pressandjournal....

We have 3 places in the #RoyalParksHalfMarathon (12/10/25) and 5 places in the #GreatNorthRun taking (07/09/25). If you fancy spending the warmer months getting fitter and would like to combine that with a little bit of fundraising please email [email protected]! #CharityRun

🛍️ New Unique Merchandise Now Available! 🛍️ We’re excited to launch our new logo merchandise - available now online! 🎉 🛒 Shop now: bit.ly/Shopunique #ShopUnique #NewMerch #RaiseAwareness

Huge thanks to super Courtney who put herself through a tough boxing match to support her little cousin Evie, a Unique member. She raised over £500 for Unique! Thanks so much for all your hard work Courtney, and thanks to all her supporters! 😊

New Guide! 🧬 We’re excited to share our latest guide on HIST1H1E syndrome! Available online as: a brand-new Single Gene Disorder Guide, a My Gene Story, An Easy Read version. Check them out now at: bit.ly/alluniqueguides #HIST1H1E #RareChromosomeDisorders #UniqueCharity

Let’s shine a light on the incredible stories of families impacted by rare conditions. By working with one another and sharing our stories, we know we can find more ways to support and celebrate people living truly unique lives.

Caring for an adult child with a rare condition comes with its own set of emotional and practical considerations, from ongoing medical care to ensuring long-term support. Your experience can inspire others, raise awareness, and strengthen the community.

A rare condition diagnosis can feel isolating, but it doesn't have to be. For 40 years, #UniqueCharity has connected families worldwide, offering support and understanding for those navigating rare chromosome and gene disorders. #ChromosomeDisorder #GeneDisorder #rarediseases

Fertility can be challenging, especially for couples with rare conditions like balanced translocation presenting unexpected hurdles in starting a family. We want you to know that you are not alone. #RareDiseases #UniqueCharity #ChromosomeDisorder #GeneDisorder

Swipe to read truly #UniqueStories from parents of young adults living with a rare chromosome disorder. We're proud to offer support for those impacted by rare disease. #UniqueCharity offers scientifically accurate guides, peer support, and events that bring families together.

Swipe to read truly #UniqueStories from parents of young adults living with a rare chromosome disorder. We're proud to offer support for those impacted by rare disease. #UniqueCharity offers scientifically accurate guides, peer support, and events that bring families together.

Join the 17q12 CNV Virtual Forum! 📅 Date: 11/03/2025 🕒 Time: 08:30 - 15:00 (M.T / GMT-7) 💻 Virtual Event – Open to Participants Worldwide 🔗 Register here: https://bit.ly/17q12CNV #17q12CNV #RareGenetics #GenomicMedicine #PrecisionMedicine #GeneticDisorders

Support, knowledge & community can change lives. Swipe to read heartfelt stories from some of the brilliant scientists, geneticists & doctors we have had the fortune to work with. Our work extends globally, offering resources on rare chromosome and gene disorders.

Navigating the world of rare chromosome and gene disorders as a parent to a newly diagnosed child is challenging. We want you to know that you are not alone. Swipe through to read powerful stories from families impacted.

Every stage of life matters—from birth to adulthood, we’re here to support individuals living with rare chromosome and gene disorders. Swipe through to read inspiring stories from teens and young adults from across the world sharing their experiences.

To celebrate our 40 years, we'll be sharing 40 inspiring stories from our members impacted by rare chromosome or gene disorders from across the world. A rare diagnosis can feel overwhelming, but no family should face the journey alone.

Say hello to new member Cailin who is fundraising for Unique at www.justgiving.com/p... and selling her amazing handmade cards and gifts at a local craft fair on 16th March. Thank you so much Cailin and Pamela, and welcome to Unique! #RareChromo #UniqueMembers

Unique is turning 40! Our story began all those years ago with a little red book … and now we're launching a new digital version where you can submit your story of living with, or supporting someone with, a rare chromosome or gene disorder click the link to find out more! bit.ly/UniquesRedBook

Today is Helplines Awareness Day! If you need support you can contact Unique by email or telephone at [email protected] and +44 (0) 1883 723356 💙 Let’s spread the word and celebrate the impact of helplines! #HelplinesAwarenessDay #TalkAboutIt #Listener #SupportServices

To all in the South West of the UK! 🏃 The AJ Bell Great Bristol 10k is back, bigger and better than ever on 11/05/25 and Unique has some spaces that need filling! Be part of it and raise much needed funds for Unique at the same time! Contact: [email protected] to sign up.