Unique | Understanding Rare Chromosome and Gene Disorders

Welcome to Unique!

Unique provides support, information and networking to families affected by rare chromosome and gene disorders.

Our helpline team can help you understand your family member's diagnosis and connect you with others. Why not join us today? Alternatively, have a look around first and contact us when you're ready....

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A look back at Rare Chromo Day 2026

Rare Chromo Day 2026 took place on 25th June 2026.

Learn about what we got up to to raise awareness and celebrate our community.

Take a look

The Little Red Book

All over the world, our members have been sharing their experiences of life with rare gene and chromosome disorders.

Join us in celebrating them and their stories by reading our Little Red Book today!

Read now

Touch The Sky: listen now

Listen to 'Touch the Sky', our very own pop song now! 🌟

It's a positive, inclusive, uplifting celebration of the rare chromosome and gene disorder community. We hope you love it as much as we do! Share it with friends, family and loved ones.

Check it out here

Families

Information & support for families & individuals affected by Rare Chromosome and Gene Disorders.

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Professionals

Resources & information for professionals working with those affected by Rare Chromosome and Gene Disorders.

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Support Us

Find out how you can get involved to support us, from fundraising ideas to volunteer opportunities.

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Rare Genetic Conditions Guides and Other Resources

Click here to download our free guides to specific chromosome changes and gene variants (as well as guides to further genetics related information, EasyRead guides, children’s booklets, practical guides and translations).

View Guides and Resources

News

Conference resources

Thank you everyone who came to our conference, we are...

London Marathon 2027

Would you like to join Team Unique for the 2027 London Marathon? Well now is your chance!
Apply to be one of runners in 2027

Your Story, Your Strength: A Unique Guide to Self-Advocacy

By Juliette Harris, Genetic Counsellor, London Ehlers-Danlos Syndromes (EDS) national...

Instagram

When Briony was born, her future was uncertain. T

It’s ZTTK Syndrome Awareness Day! Our guide is

Meet Tabitha, in a month's time she will be runnin

The awareness days keep on coming this month, with

Please help us carry on by making a donation today

Only with your help at this time of uncertainty can we go on providing information and support to anyone affected by rare chromosome and gene disorders. All donations, however large or small, make a real and lasting difference. THANK YOU FOR YOUR GENEROSITY!

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Donating from the USA: You can now make tax-efficient donations to Unique from the USA.

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