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Unique Rare Chromosome Disorder Support Group

Unique provides much needed help and information to those caring for a family member with a rare chromosome or single gene disorder. These are lifelong conditions affecting at least 1 in 200 babies, causing disability and medical issues. For more information see www.rarechromo.org

About Unique Rare Chromosome Disorder Support Group


Tags: Rare diseases Disability support Health & Medical

As you navigate the world of rare chromosome and gene disorders, we want you to know that you are not alone.
At Unique, we understand genes and chromosomes.
That’s why we offer accurate and accessible medical information.
Unique is an open, supportive community for people who are looking to learn, share lived experiences and connect with others.
We work with everyone whose life has been touched by rare chromosome or gene disorders. Whether you’re someone living with a condition, a parent or carer, an educator, a social worker, a doctor or a scientist – whoever you are, Unique is here for you!
We are here to support and celebrate people living truly unique lives.
We are Unique… and so are you. This is a journey we can make together.

Your Impact

With our help, parents and carers can begin to understand and come to terms with their family member’s condition and its likely effects. We break down complex terminology into accessible language, and go through therapies and treatments seen to have been effective in others. We aim to help families become ‘expert’ in the condition, able to better plan care and better advocate for their family member to ensure they receive appropriate support to reach their full potential, whatever that might be. With many hundreds of different RCDs, the challenges and symptoms our families face cover a very wide spectrum, as do the outcomes for those affected. The information we provide goes beyond purely medical and covers other important issues like behaviour, communication and education, drawing on the experiences of other families to help those coming to term with a diagnosis. This is often quite literally the only information available to them and gives families some renewed hope and confidence as they face the future.