Researchers are gathering views on how research into rare conditions can be more accessible to people in Ireland and Northern Ireland. If you live in the republic of Ireland or Northern Ireland you can get involved in a survey (15 mins) or interview. cphqub.qualtrics.com/jfe/for…

Lose the extra. Keep the kindness. #LowKeyKind Learn more about our campaign and keep an eye out for our posters: lowkeykind.cc/

Get prepared nice and early, and get your Hanukkah cards in our shop. A pack of 10 costs only £3.50! Get yours here: unique-chromo-shop.myshopify…

We have a new guide on#17p11.2 and #17p12 duplications - also known as #PotockiLupski syndrome (#PTLS), #CharcotMarieTooth disease type 1A (#CMT1A) or #YuanHarelLupski syndrome (#YUHALsyndrome). Read our guide on 17p11.2 and #17p12duplications here: rarechromo.org/media/informa…

Today is also ZMYND11 Awareness Day The ZMYND11 Treatment Foundation was set up with the goal to find treatments that improve the function of the ZMYND11 protein, to decrease the severity of symptoms caused by the disorder. zmynd11.org/

We stopped asking the public to understand. Learn more about our Low-key Kind campaign in the latest edition of @RareRevolutionM 👉 bit.ly/RARE-X-Linked-Unique #RareRevolution #LowKeyKind #LowKey #PublicAwareness #RareDiseaseAwareness

Diagnosed within months of birth, Maisie’s journey shows the power of early answers. Her #CFCsyndrome #diagnosis helped guide support from the very start. Read her story here: rarechromo.org/little-red-bo…

We asked Unique families about the moments that stayed with them. Not because anything huge happened. Quite the opposite. When someone just got it right, quietly. That’s low-key kind. lowkeykind.cc/

Last month Mike took on the Yorkshire Day Half Marathon. He ran for Unique and for his son, Blake, who has a rare chromosome and gene disorder. He raised over £526 for Unique to help us produce easy to understand information and connect more families with rare diagnoses.

🎄Our new 2026 Christmas card designs have arrived and are available to buy now! Head to our website to get your packs and feel a little organised for the festive season. Don't miss out—order your cards today before they sell out! 👉 unique-chromo-shop.myshopify…

We asked families what happens in ordinary public situations. Then the public what goes through their mind when they notice someone and aren’t sure how to react. The results are why we created Low-key Kind. Have you noticed one of our posters yet? 👉 lowkeykind.cc/NoticedMap

We're having a lovely time here at the #RareSummit 🙂

“I couldn’t imagine my life without him.” Johnny lives with #4qDeletion syndrome, #autism, and #ADHD, but above all, he’s a happy boy who brings joy every day. Read his story here: rarechromo.org/little-red-bo… and share your story in the comments.

We're delighted to be at the #RareSummit today, if you're stopping by then please come and say hello at our stall - next to our friends at @RareBeacon It's always a fantastic event where great minds come together for change :)

Our final Makaton sign of the day is thank you, taught to you by Emma and another extra special guest. Thank you for learning with us and finding out just one of many ways that you can communicate with people who are non-verbal. #Makaton #communicating #ThankYou #NonVerbal

Now you've learnt drink and biscuit, we have to teach you 'more' because everyone needs more biscuits every now and again! Here's Gemma to teach you how to say 'more' Can you say 'more biscuits' in Makaton now?

Today we're learning drink and biscuit with Claire and Emily (and a few extra special helpers too!) Let us see you try, and tag us in your videos. #Makaton #drink #biscuit #communication #NonVerbal

And today, Matt is teaching you how to say 'toilet' in Makaton. Can you now say toilet in Makaton? Certainly one that might come in handy one day.

These webinar's will help you understand the benefits system, wills and trusts' and universal credit. Hosted by the knowledgeable team at @renaissance_uk. Book now to learn more: renaissancelegal.co.uk/event…

Today, Francesca teaches you how to say 'help' in Makaton. You never know when it might come in handy, for you or for understanding someone else. Give it a go, share and tag us in your videos.