Unique

Last Week we attended the #GenomicsShowcase2026 ! Thank you very much to Emily and @Unique_charity for chatting to us! 💙 #Ataxia #RareDisease #Awareness #StrongerTogether

Diary date 16th May Morriston Hospital #Medical Students and #doctors #RareDisease Study Day We will have a stand along side our friends @Unique_charity @ataxia_and_me @step_by_step @NEWSFORTOFS @morgans_Army @medics4rare @walesgenepark

SUDEP is rarely discussed within the #Ring20 #epilepsy community by their medical team, nor is it discussed how to reduce risk of #SUDEP at home. We're currently looking for r(20) participants to take part. Get involved: ring20researchsupport.co.uk/sudep_survey

The ‘BEOND’ survey is now open! 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: 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 - matt@rarechromo.org

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 do a wonderful job supporting families that are still looking for a diagnosis for their children. You can learn all about their work here: geneticalliance.org.uk/support-and-in…

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: 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 #RareConditions.

In other news - the general TCS London Marathon ballot opens TOMORROW (24th April 2026) for one week only (until 1st May 2026). If you are interested in taking on the challenge we recommend you get your name is the general draw!

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: rarechromo.org/london-maratho…

'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.' …ellgreatmanchesterrun2026.enthuse.com/pf/gareth-shaw

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. unique-chromo-shop.myshopify.com/collections/un…

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 calendar, choose your event and sign up today 👣 - Glasgow, 25th and 26th April - Aberdeen, 7th June - Dundee, 16th August - Edinburgh, 13th September See you there: 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: project8p.org