Unique - Rare Chromosome Disorder Support Group

Unique - Rare Chromosome Disorder Support Group Support, information and networking to help those with rare chromosome and gene disorders and their families.

To join, please head to rarechromo.org/join-us for all the details This is the public page of the Official Unique rare chromosome disorder support group. Unique's aim is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.Unique is a registered charity - charity registration no. 1110661

Get you personalised   image NOW!Marisa, our fantastic volunteer is helping us to create Rare Chromo Day designs like th...
05/06/2026

Get you personalised image NOW!

Marisa, our fantastic volunteer is helping us to create Rare Chromo Day designs like these for anyone who wants one. Just share a photo and the name you'd like on the design to [email protected] and we'll get one made for you asap.

Here's all the Unique Team with theirs!

This Volunteers’ Week, we want to say a huge thank you to anyone who gives their time, energy, passion, lived experience...
04/06/2026

This Volunteers’ Week, we want to say a huge thank you to anyone who gives their time, energy, passion, lived experience and skills voluntarily to Unique.

Your dedication helps us to extend our support network, reduce and ensure our services meet the needs of our members. You also help us to shape what we do. Because of your involvement we can reach more families looking for support, translate our guides to many different languages, increase the number of resources we can offer and be there for any family that need us.

If you’d like to learn more about getting involved, please email us at [email protected]

Thank you to all of our amazing volunteers, this week and throughout the rest of the year.

🚲 It's World Bike Day today. If you get out for a ride, let us know so we can add your ride to our 3 billion step count!...
03/06/2026

🚲 It's World Bike Day today. If you get out for a ride, let us know so we can add your ride to our 3 billion step count! Or why not use this as an opportunity to create a cycling challenge over June or July to help us raise £34,000 to help us continue our vital support for families around the word!

Learn about our 3 billion step challenge for Rare Chromo Day here: https://www.justgiving.com/campaign/rarechromoday2026

Lucie chose to run the Brighton Marathon for Unique because she learnt about all the work we do while studying genetic c...
02/06/2026

Lucie chose to run the Brighton Marathon for Unique because she learnt about all the work we do while studying genetic counselling, she witnessed just how important our work is to the families we support.

Lucie smashed the marathon, getting her personal best during the event and raised a £617 to help us continue our vital work. THANK YOU LUCIE!

If you'd like to sign up to next year's Brighton Marathon, you can do so here: https://runforcharity.com/event/unique-rare-chromosome-disorder-support-group/the-brighton-marathon

Did you know we produce Easy Read Guides, designed to make complicated written information easier to understand?Our late...
30/05/2026

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 under the 'Easy Read Guides' header on our Disorder Guides page.
https://rarechromo.org/disorder-guides/

We are delighted to announce the launch of Genes, Brains, and Breakthroughs — a new public awareness campaign from the D...
28/05/2026

We are delighted to announce the launch of Genes, Brains, and Breakthroughs — a new public awareness campaign from the Department of Paediatrics at the University of Oxford.

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 around neurodevelopmental disorders and therapeutic genomics.

The project was shaped directly by the experiences and questions of parents and carers, helping to ensure the resources are clear, compassionate, and meaningful for families navigating rare genetic conditions.

⏯️ https://www.youtube.com/

A huge thank you to all the families and advocacy groups who generously shared their experiences and expertise to make this project possible, including FamilieSCN2A, GRI-UK, SLC6A1-Connect-UK, and Unique.

Developed in collaboration with families, researchers, clinicians, and advocacy organisations, the campaign features a series of accessible animated videos designed to improve understanding of neurodevelopmental disorders, genetics, and emerging therapeutic approaches.

The campaign was funded by the University of Oxford’s Public and Community Engagement with Research (PCER) Fund and the MRC Centre of Research Excellence in Therapeutic Genomics.

Trying to think of a challenge to do to help us with our 3 BILLION STEPS CHALLENGE?Most active challenges can be convert...
27/05/2026

Trying to think of a challenge to do 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 on how to change your activity into steps.

⚽ For example a charity football / soccer match could get us 325,800 steps between two teams playing for 90 minutes!

💃 Getting your child's class to have a 10 minute dance break every day for a month could help us get 752,100 steps (we'd love get as many schools involved as we can!)

🦽Wheeling 5k over a month will help us get 7,000 steps

So.. What will you do? Learn more here: https://rarechromo.org/rare-chromo-day-2026/

The London Landmark Half Marathon is up there as one of the most popular events, so claim your spot quick!The event that...
27/05/2026

The London Landmark Half Marathon is up there as one of the most popular events, so claim your spot quick!

The event that takes you around iconic London sites will happen on 4th April 2027. We have 5 places available on a first-come-first-served basis. Places are £30 for the promise of raising £400 for Unique.

Book now and we'll get your running t-shirt in the post: https://runforcharity.com/event/unique-rare-chromosome-disorder-support-group/london-landmarks-half-marathon

If you register now, you can use our 3 billion step challenge to start your training and fundraising to help us reach our Rare Chromo Day target!

Address

Oxted
RH8

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+441883723356

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