Swan - Genetic Alliance UK

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.

SWAN UK (syndromes without a name) is the only specialist support network available in the UK for families of children and young adults affected by a syndrome without a name. We work with families of affected children and young adults aged 0–25, providing support and information in hospital, at home and in their local communities. 

What support does SWAN UK offer?

We offer 24/7 access to support and information via our members –only online communities, regular opportunities for parents to access face-to-face support as well as running regular whole family events.

Our team of volunteer Parent Reps work locally to help facilitate our SWAN UK Local Networks, providing on-the-ground support and educating local services and professionals about the issues faced by families affected by undiagnosed genetic conditions.

Membership of SWAN UK is free for any family in the UK with a child or young adult (0-25) affected by a syndrome without a name.