SWAN stands for syndrome without a name and is a term used to describe when a person has a genetic condition so rare it is yet to be, and will often remain, undiagnosed.
SWAN UK is the only dedicated support group in the UK for families of children and young people with undiagnosed genetic conditions. SWAN UK is run by the charity Genetic Alliance UK.Our aim at SWAN UK is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. 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 know that there are lots of families out there who would benefit from the support of SWAN UK but aren’t aware that we exist. If you support any families who you think we could help through the peer-to-peer support and information resources that we provide, please don’t hesitate to put them in touch, or direct them to this page of our website where they can find out more about becoming amember: https://www.undiagnosed.org.uk/join/
SWAN UK Cymru has recently produced a flyer and a poster advertising the work of SWAN UK in Wales. These can be accessed below:
