Campaign by 
Story
SWAN UK supports families affected by a syndrome without a name (SWAN) - a genetic condition so rare it often remains undiagnosed.
Each year thousands of children are born with a syndrome without a name, and without a diagnosis, families can be left with little to no support.
Before we found SWAN UK, my family and I felt isolated, we didn't fit in anywhere. Nobody seemed to be able to help us or understand what we were going through. Then we found SWAN UK, they have been like family ever since. I've made amazing friends, met some awesome and inspiring people, found the support and understanding we needed and finally found the place we fitted in.
Our thriving community of individuals and families affected by a syndrome without a name provides a vital support network. This includes:
Online forums for families to connect and share experiences
Fun and inclusive events. We organise virtual coffee meet ups for parents, host online events and hold face-to-face family events and information events
An understanding, empathetic and informed team. Through the SWAN UK team, which sits as part of Genetic Alliance UK, we provide those within the SWAN UK community with a way to get better informed about undiagnosed genetic conditions, and important updates in research and policy
Educational outreach. We support the SWAN UK community and healthcare professionals, by educating those working in the NHS about the challenges faced by families affected by a syndrome without a name
This Undiagnosed Children's Day, please support SWAN UK so we can continue our vital work.