SWAN UK - Syndromes Without a Name

SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition  so rare it often remains undiagnosed. 

The aim of SWAN UK is that every family gets the support that they need, regardless of whether or not they have a diagnosis. Our work involves:

• Developing and supporting the undiagnosed community. We focus on building and nurturing a community for families of children with undiagnosed genetic conditions​​
• Providing high-quality information and services. This ensures that families have access to the best possible support and information​​
• Raising awareness of syndromes without a name. We work to increase public and professional understanding of the unique challenges that families face

SWAN UK community membership is completely free, with registration quick and easy.