help@rarechromo.org
Understanding Rare Chromosome and Gene Disorders

Rare Chromo Day 2025


We launched some exciting new publications on Rare Chromo Day 2025. See what we did to raise awareness for the community, read our new Little Red Book and dive into our latest report sharing the Unique experiences of our community.

Take a look

Our new 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

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....

Become a Member

Touch The Sky: listen now


Listen to 'Touch the Sky', our very own pop song now! ๐ŸŒŸ

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

News

๐Ÿ“ข We're Hiring!โ€“ Community Contacts Coordinator ๐ŸŒŸ

We are looking for a reliable and strong communicator as our Community Contacts Coordinator to lead on the recruitment, training and ongoing support of volunteers from the Unique membership to ensure they feel confident, connected and valued in their roles. Working closely with the Engagement and Communications Officer, the postholder will also help plan and run a programme of virtual events and online activities tailored to the needs of our members and encouraging supportive peer relationships between them.

Read more

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

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

Read more

Launching a โ€˜magicalโ€™ new teaching resource

Science meets magic in an innovative new teaching resource for...

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