WHO WE ARE

SWAN UK supports families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.  We are the only dedicated support network for these families in the UK and are run by the charity Genetic Alliance UK

Our aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. We work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis.

Our network brings families together in a supportive community who understand the unique challenges of life without a diagnosis. We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer Parent Reps. 

We educate professionals about the issues faced by families affected by a syndrome without a name and seek to help improve services so that all families can access high-quality coordinated care and appropriate testing or treatment.

We also champion the rights and needs of the undiagnosed community through the policy work of Genetic Alliance UK, and through initiatives such as SWAN Europe and the Solve RD Community Engagement Task Force.

Image shows a young boy with blonde hair smiling into the camera. He is sat on his dad's lap.
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