Did you know we produce Easy Read Guides, designed to make complicated written information easier to understand? Our latest guides are for 'Planning your future after school' and 'Transition from children to adult healthcare'. Find them on our Disorder Guides page. https://ow.ly/lcSY50Z1xRK

You can now watch a fantastic set of videos aimed not only to support affected families, but also to improve wider public understanding, reduce stigma, and encourage more inclusive conversations. Take a look: https://www.youtube.com/@genebrainbreakthrough

The London Landmark Half Marathon is up there as one of the most popular events, so claim your spot quick! We have 5 places available for the 4th April 2027 on a first-come-first-served basis at £30 for the promise of raising £400 for Unique. Book now: https://ow.ly/KhZJ50Z4z6V

Trying to think how to help us with our 3 BILLION STEPS CHALLENGE? Most active challenges can be converted to steps, so no matter what you decide to do, you'll help us to reach our goal. Click through the images to get some ideas. So.. What will you do? https://rarechromo.org/rare-chromo-day-2026/

Meet Aria who lives with #FloatingHarborSyndrome, caused by an alteration in the #SRCAP gene. 'She's such a funny, kind, amazing little girl with a big heart who's loved by everyone she meets!' You can learn more about the condition in our guide here: https://ow.ly/al2r50YYi7i

ONE MONTH UNTIL RARE CHROMO DAY 2026. We're raising £34,000 through sponsored challenges to reach 3 BILLION STEPS - If you're feeling adventurous, we encourage the use of welly's! Learn all about how to get involved here: https://rarechromo.org/rare-chromo-day-2026/

Another day, another spotlight on some of our incredible fundraisers. This time we want to show appreciation to Lucy and Jimbo who took on the #ChesterHalf for Unique. They have currently raised £1,500, smashing their original target. Support them here: https://www.justgiving.com/page/lucy-jimbo

A special shout out today goes to Laith, who recently oversaw Kool Kids' popular stall. He spent the day in his directors chair making sure everything ran smoothly. A big thank you to everyone who stopped by to purchase some goodies.

We are so honoured to be Kool Kids charity of the year, they recently held a successful fundraising stall at their local carnival raising vital funds to support our community. How great does their stall look - no wonder it was so popular! Thank you for your continued support, it means the world!

Recently these young entrepreneurs held a street sale fundraiser to raise money for Unique. They did a fantastic job raising money and chatting to passers by to spread the word about our small charity. We love to see such imaginative and unique ways our community supports us.

Last week Dan took on the #SteelCottonRailTrail, a colossal 62.8-mile walking route, raising £660 (and growing) for Unique. Thank you Dan for taking on the challenge to raise vital funds to support alleviate isolation for our community. Donate to Dan's fundraiser: https://ow.ly/MQ7I50YXC0r

Thank you to the Quilter Foundation who have granted funds to support our Community Contact Project, helping put on family gatherings and form local connections around the country over the next year. Become a Community Contact and organise an event near you by emailing [email protected].

It's #MentalHealth Awareness Week. The Rareminds Wellbeing Hub is filled with resources and information to help you live as well as possible with your #RareCondition and covers a wide range of topics. Take a look around and find a resource or strategy that works for you: https://ow.ly/Xwxi50YYa5N

May is as International #CriDuChat Awareness Month. We are thrilled to announced that we now have a new guide on Cri di Chat, also known as #5pDeletionSyndrome. Take a look and help us reach more families who could benefit from this knowledge: https://ow.ly/TrXB50YXzGa

Lydia took on the Paris Marathon last month and raised a huge £750 for Unique! What a huge achievement, and what a stunning location to run, it's lovely to see a big smile on her face even at the end of such an epic event! Find an event near you: https://ow.ly/U5XQ50YXuGa

Come along and hear about the GenROC study and its results with Karen Low, Chief Investigator of the GENROC study. This online event is on Wednesday 24th June 2026 at 12:30 (UK time). Get in touch or comment below to receive the joining link - see you there!

'14 weeks ago I was blessed with the arrival of my beautiful Halli-Ann. 6 weeks later however our world was shattered when Halli was diagnosed with a rare gene disorder: Bainbridge-Ropers syndrome' Read Halli's story by her mum, Jordan by clicking through the photos

The ‘BEOND’ survey is now open to families! The survey is open to parents/caregivers of children and adults with rare genetic syndromes and/or intellectual disabilities. The survey takes about 60 minutes to complete. You can learn more and take part here: https://www.cerebranetwork.com/beond

💛 Today is Global Developmental Delay Awareness Day 💛 A diagnosis of GDD can be confusing and lead to more questions about the future, but in some cases, an early diagnosis can help lead to better support. Share your experiences of receiving a diagnosis below 👇

We've just sent out this month's newsletter to all members! Check your inbox to find the recordings from our conference. If you haven't received your newsletter get in touch with Matt and we'll make sure we have the correct email details for you - [email protected]

GOOD LUCK to all the London Marathon runners today - especially to #TeamUnique! Look out for the bright t-shirts - and for Laura, the #wellies! - and if you're out there watching from the sidelines please give them a big cheer to motivate them along the way. #LondonMarathon

Happy #UndiagnosedChildrensDay! Our friends at SWAN UK (Syndromes Without A Name) do a wonderful job supporting families that are still looking for a diagnosis for their children. You can learn all about their work here: https://ow.ly/Q70e50YOTSy SWAN UK is ran by geneticallianceuk.bsky.social

The TCS London Marathon ballot opens today for ONE WEEK ONLY, until 1st May. If you're successful in their selection and would like to fundraise for Unique, we'd be honored to have your support. Find the ballot on the official website: https://www.londonmarathonevents.co.uk/ballot

We had a great time at the #GenomicsShowcase in Cardiff today! Thanks to everyone who came along to our stand. It was great to see and hear about all the fantastic work that people and organisations are doing to support are raise awareness for people affected by rare conditions.

It's the TCS London Marathon on Sunday and we're already thinking ahead to next year! 🤯 We have opened up applications to find our next London Marathon participants to join #TeamUnique! If you're interested, download and return our form by 5th July 2026: https://rarechromo.org/london-marathon-2027/

'We are taking part in the Manchester 10k to raise money for Unique. Our daughter has a 10q deletion, and this charity has been such an important source of support for families like ours. If anyone is able to donate, we would be so incredibly grateful.' https://ow.ly/InCb50YNlJt

Caroline and family raised a whopping £5,850 during Sophie's first birthday fundraiser. The group took on a 10km kayak to support families affected by rare chromosome and gene disorders. Thank you to the kayak team and to every person who donated to Sophie's birthday fundraiser.

Today is Tetrasomy 18p Day! April 18th is dedicated to raising awareness about the rare genetic condition, tetrasomy 18p, which involves having four copies of the short arm of chromosome 18. Help us raise awareness by sharing our post. #Tetrasomy18pDay #UniqueCharity #Tetrasomy

'What if my child has a rare chromosome AND gene disorder?' You asked, we listened. We now stock sunflower lanyards with a card that reads 'I have a Rare Chromosome and Gene Disorder'. Head to our shop to get yours today. https://ow.ly/8b7L50YGsA7

Today is International #WolfHirschhornSyndrome Awareness Day. Try these charities for support: North America: 4p- Support Group Spain: @AESWH Italy: Associazione Italiana sulla Sindrome di Wolf-Hirschhorn UK and Ireland: Wolf-Hirschhorn Syndrome Trust Share more below 👇

THANK YOU KARIS for raising £5,280 for Unique. She did an incredible job putting on an event filled with games, laughs and amazing prizes, take a look at all the smiling faces at the event! We want to both thank her and wish her the best of luck in the Miss GB competition!

Who wants to take on a Kiltwalk in one of the great Scottish cities? Check your calendars, choose your event and sign up today 👣 - Glasgow, 25th and 26th April - Aberdeen, 7th June - Dundee, 16th August - Edinburgh, 13th September Hopefully see you there: https://www.thekiltwalk.co.uk/events/

We now include links to Project 8p in all related guides! Project 8p Foundation is dedicated to researching chromosome 8p disorders to uncover treatment, improve care, and provide meaningful answers families. Learn about Project 8p here: https://project8p.org/

📅 Save the date for #RareChromoDay 2026: Thursday 25th June 2026 What will you do to help raise awareness this year? Get your child's school involved, wear bright colours to celebrate our community or host a fundraiser to help us reach more families around the world.

We’re working on a new members pack and want to include experiences of how our members have connected with others through Unique. If you've connected with other members we'd love to hear from you. You’re welcome to remain anonymous. Email [email protected] to be included. 👨‍👩‍👧‍👦

Over Christmas, Bertille won £1,000 for Unique by smashing the Webmart Christmas game! Thanks for taking on the challenge and helping us support more families. And thanks to Webmart for the fun challenge each year!

Meet Caroline, born on 27th December 2024 in #NorthCarolina. Caroline was diagnosed with 1q2.1 deletion syndrome. She has low muscle tone, a heart defect, feeding problems, and gastrointestinal problems. The family are thankful for everyone involved in her care. Read Caroline's story below👇

Our very own Niamh is running the Lake Garda Marathon for families affected by rare chromosome and gene disorders. Help Niamh reach her target and give her a boost! 🏃‍➡️ 👉 https://ow.ly/c3wM50YBQLR We can't wait to celebrate with a tea and biscuit in the office! 🍵🍪

Final day to apply for our Community Contacts Coordinator role. If you're interested in joining our small tea, to help us connect more families affected by rare chromosome and gene disorder, this role might be for you. Apply now: https://ow.ly/f8j250Yr6br #hiring

It's #PurpleDay. Help us spread awareness of epilepsy by telling your 'if I Can, You Can' story to help more people understand what living with epilepsy really means. If you're sharing your story today, don't forget to tag us in your posts

🥳🎈 Our Facebook group for our wonderful Unique members in New Zealand turned 14! Happy birthday to the group, and a huge thank you to Michelle, our local contact for New Zealand who does an absolutely fantastic job supporting our members across the country.

One week to go to apply for our Community Contacts Coordinator role. If you're interested, or know some who is, send your cv and cover letter to [email protected] by Apply by 31st March. Learn more on Charity Jobs: https://ow.ly/f8j250Yr6br

Researchers are inviting individuals with a #SCN1B genetic variant to take part in a short online survey to learn more about the experiences of people with SCN1B. Want to help? Complete the 10‑minute survey: https://redcap.link/ftykr35s#SCN1B #EpilepsyResearch #RareDisease #Genetics

We're looking for a Community Contacts Coordinator to join our team. Could you help develop Unique’s volunteer strategy and build a strong sense of community through meet-ups and workshops? Apply by 31st March: https://ow.ly/f8j250Yr6br

A double thank you to McLarens and LBIA. Recently we were selected to be the chosen charity at the LBIA dinner which raised over £7,000 for Unique. Today McLarens team came to our office to help put together our conference packs ready for our event on Saturday. THANK YOU!

We have a fantastic team of fundraisers at Thomas and Thomas Surveyors taking on the 3 Peaks Challenge next month. They're supporting Unique as "I have seen first-hand the excellent work they do supporting families when they need it the most." - Jonny (Director) https://ow.ly/bvgG50Yp3Ra

Not long until An introduction to blended diet for tube feeding with Wilbo's Blends On Tuesday 24th March 2026 at 1:00pm (UK time), Gareth Birkett, will share his expertise on the topic. Please register if you'd like access to the recording after the event - [email protected]

Our collaboration with Tilly’s Tubes is LIVE! We have created four different designs of #TubieTape and #TubiePads with our brand and we couldn't be more excited. 30% of every sale of our Unique branded designs comes to Unique. Take a look: https://tillystubes.co.uk/collections/unique-tillys-tubes

We are hiring: Community Contacts Coordinator Our new Community Contacts Coordinator will lead on supporting volunteers from the Unique membership and help plan and run a programme of events tailored to the needs of our members. Could this be you? Apply by 31st March: https://ow.ly/f8j250Yr6br

Unique supports and informs families affected by rare chromosome and gene disorders and the professionals working with them. If you are affected by a rare chromosome or gene disorder you can join our membership for free: https://rarechromo.org/join-us/