An introduction to blended diet for #TubeFeeding, Tuesday 24 March 2026 at 1:00pm (UK time) Our upcoming webinar is hosted by Gareth Birkett, founder of wilbo's Blends, who is transforming enteral nutrition for patients and families worldwide. To register contact [email protected]

Introducing our final #LondonMarathon runner, Archie! 'I have chosen to run for Unique because I am actually on their database as I have a duplicate chromosome that still hasn’t had a complete match to anyone else' Support Archie's fundraiser here: https://www.justgiving.com/page/archie-coleman-1

We're ending Feeding Tube Awareness Week on a very exciting announcement! 🤩 We will soon be collaborating with the amazing Tilly's Tubes to create some Unique branded feeding tube accessories. WE CAN'T WAIT! 👀 Keep an eye out for updates soon

Did you know 1 in 17 people will be affected by a rare condition at some point in their lives? Take a look around you and have a think about how many people that really is! Help us spread the word so changemakers know why they should #CareForRare. #RareDiseaseDay #Rarequity

Today we meet Laura, a hopeful for a world record holder in running the #LondonMarathon in WELLIES! She's got a big supporter team routing for her, and that certainly includes all of us here at Unique! You can support Laura's #RecordBreaking mission here: https://ow.ly/Wvbp50Y0yxM

Introducing London Marathon runner, Junaid 'I chose to run the London Marathon for Unique after learning more about the impact of their work. It’s a cause that made me feel grateful, grounded, and motivated to support!' Can you help Junaid's fundraiser? https://www.justgiving.com/page/junaid-ahmed

Meet Doug, who is running the #LondonMarathon for Unique because: 'Unique has supported my family for many years and has been there throughout my brother’s life. I am aiming to complete [my first ever marathon] in under four hours.' Support Doug here: https://www.justgiving.com/page/douglas-austin

Calling for carers of Angelman syndrome, Fragile X Syndrome, Rett syndrome and 22Q deletion syndrome! Researchers want to hear from you to identify better ways to support families affected by each of these conditions. Take their short survey: https://cphqub.qualtrics.com/jfe/form/SV_3dBVHDFL1DkgjzM

Meet Cath, a London Marathon runner. 'I work as a #GeneticCounsellor in the #NHS and see firsthand how important Unique's work is for our patients. It's cold, dark and wet here, but the donations are keeping me on track with my training!' https://2026tcslondonmarathon.enthuse.com/pf/cathryn-moss

We’re inviting individuals with a #SCN1B genetic variant to take part in an online survey led by the University of Bristol. Your input will help improve understanding and support for families affected by SCN1B. Click here to take part: https://redcap.link/ftykr35s

Today is #TBCK Awareness Day!🧬 The name TBCK syndrome derives from the gene which, when altered, can cause this condition. The TBCK gene name is an abbreviation of ‘TBC1 Domain Containing Kinase’. Read our quick read guide on TBCK syndrome head to: bit.ly/TBCK

Our upcoming webinar, Feeding and Eating Difficulties in Children with Rare Genetic Conditions: Insights from the IMAGINE-ID Study is coming up on 11th February 2026. If you're a member of Unique and want to join us, please get in touch via [email protected].

Northern Ireland, we've received the news that we have funding from @TNLComFundNI to host an event in Northern Ireland. We can't wait to meet you, and offer support and information for our community. Keep your eyes out for more info as we start planning the event! See you soon!

Some important new DECIPHER features released by @deciphergenomics.bsky.social today, including a new management/therapies tab, and links to single gene disorder guides from @uniquecharity.bsky.social

We're excited to have our guides feature on @deciphergenomics.bsky.social‬'s website. We hope this helps more families access information about their diagnoses. We love collaborations like this, thank you DECIPHER!

Genetic Alliance UK is exploring what equity means for people living with rare conditions as part of their #RareDiseaseDay 2026 campaign. 💭 To show the stories behind the statistics, they want to hear your experiences. Click to take part ⤵️ https://loom.ly/yKiNx2Q

Today is the International Day of Persons with Disabilities, and the theme is Health financing matters. There are 1.3 billion persons with disabilities in world, which means that achieving health for all must fundamentally address the needs of persons with disabilities. 1/7

Charlotte Wilmshurst #BSGM2025 Inconsistency in naming of genetic conditions causes challenges for those affected, including barriers to support. @uniquecharity.bsky.social highlighted that many families prefer the use of eponymous names. guidelines for naming practices in progress.

HAPPY BIRTHDAY SARAH 🎂🥳🎈 It's Unique's wonderful CEO, Sarah Wynn's birthday today and we need your help! Join us in embarrassing (and celebrating) her by sharing your birthday messages in the comments. 1/3

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....