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.

SWAN UK's mission is to make sure that no family is left behind. My sister was a part of this community for over 10 years until she received her rare genetic diagnosis. For many children like my sister they go years without knowing the names of their conditions. I want to do my part in helping children receive their correct diagnosis.