You are viewing an archived entry from the 2023 awards

2023
2023
People’s Choice Award 2023 £350,000-£1 million turnover
Judges’ Award 2023 £350,000-£1 million turnover

Genetic Alliance UK (SWAN UK)
SWAN UK Undiagnosed Children's Day 2022

Film & Campaign Description

Allison shares her experiences of having two undiagnosed children.

Genetic Alliance UK (SWAN UK)

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 support 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.