Unique - Rare Chromosome Disorder Support Group

12/10/2026

Happy Canadian Thanksgiving!

Did you know, one of our staff members, Anna (a Scientific Communications Manager here at Unique) lives in Canada? We love it when she brings over some maple syrup biscuits when she pop over every summer!

She’s also recently joined the Canadian Organization for Rare Disorders (CORD) Readiness Action Group, working alongside fellow advisors to explore how Canada can strengthen readiness for new therapies and improve care for people living with rare conditions. Over the coming months, the group will examine lessons from several rare disease pathways, identifying barriers, challenges and facilitators that can help inform future approaches to care.

She’s also been collaborating with McGill Rare, a ‘Science Undergraduate Society (SUS)’ club at McGill University who have been expanding our range of ‘My Chromosome/Gene Story’ picture booklets for children and translating them into multiple languages! The next batch are in preparation so keep an eye on our webpage!

12/10/2026

https://lowkeykind.cc/

We asked families supported by Unique what happens in ordinary public situations.

Families talked about the staring, the looking away, people speaking to the parent instead of the child, help arriving before anyone had asked for it, children being shushed for asking a question, everyone becoming slightly careful at once.

Then we asked the public what goes through their mind when they notice someone and aren’t sure how to react.

The public talked about worrying they would get it wrong. Should I look or look away? Say something or leave it? Offer help or wait to be asked? What if my child asks a question? What if I say the wrong thing?

That's why we created Low-key Kind. Have you noticed one of our posters yet?
Let us know when you have by Sending it in 👉 https://lowkeykind.cc/NoticedMap

11/10/2026

We asked Unique families about the moments that stayed with them.
Not because anything huge happened. Quite the opposite. Someone just got it right, quietly.

“My son struggles in busy social situations and can find it really difficult to join in with other children or people he doesn’t know.

At my nephew’s party, he was struggling and I could see him becoming overwhelmed. A gentleman who was also at the party seemed to notice. He didn’t ask me what was wrong, make a fuss or point out that my son needed extra support.

He simply walked over to him and asked, ‘Do you want to play football?’

And that was it.

I watched my son go off and play football with a complete stranger, smiling and completely comfortable.

I’d never seen him do that before. I don’t know whether that gentleman realised my son needed a little extra help in that moment, but I think he did.

And the way he gave it was perfect... quietly, naturally and without making my son feel different.

To him, he probably just played football with a little boy at a party.

To me, I got to watch my son do something I’d never seen him do before and may not again.

I’ll always remember him for that.”

It doesn't seem much, but to the family, it meant the world. He noticed.
He just asked if he wanted to play football.

That’s low-key kind.
https://lowkeykind.cc/

10/10/2026

Last month Mike took on the Yorkshire Day Half Marathon in Leeds. He ran for Unique and for his son, Blake, who has a rare chromosome and gene disorder.

'He's my inspiration. He's an inspirational brother, son, and human being.'

Thank you Mike for raising over £526 for Unique, a huge amount of money that will go a long way to help produce easy to understand information, and connect more families facing challenges due to rare diagnoses. You're a superstar - keep up the running 🏃‍➡️

You can read about Mike's story, and donate to his fundraiser via JustGiving here: https://www.justgiving.com/page/michael-barrett-1988

09/10/2026

🎄Our new 2026 Christmas card designs have arrived and are available to buy now!

All our older designs are also on sale. 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! 👉 https://unique-chromo-shop.myshopify.com/collections/christmas

08/10/2026

We asked families supported by Unique what happens in ordinary public situations.

Families talked about the staring, the looking away, people speaking to the parent instead of the child, help arriving before anyone had asked for it, children being shushed for asking a question, everyone becoming slightly careful at once.

Then we asked the public what goes through their mind when they notice someone and aren’t sure how to react.

The public talked about worrying they would get it wrong. Should I look or look away? Say something or leave it? Offer help or wait to be asked? What if my child asks a question? What if I say the wrong thing?

That's why we created Low-key Kind. Have you noticed one of our posters yet?
Let us know when you have by Sending it in 👉 https://lowkeykind.cc/NoticedMap

08/10/2026

👀 Today is World Sight Day!

Did you know at least 2.2 billion people worldwide have a vision impairment, and nearly half of these cases are preventable or yet to be addressed?

For many families affected by rare chromosome and gene disorders, vision differences are just one part of a much bigger picture. Today, we're raising awareness for sight, and for the genetic conditions that can shape it. 🧬💜

07/10/2026

We're having a lovely time here at the 🙂