SWAN UK, a support community for families affected by undiagnosed genetic conditions, is gearing up to raise awareness on Undiagnosed Children’s Day this Friday, April 25, 2025.
Undiagnosed genetic conditions, also known as syndromes without a name, occur when a child or young adult is believed to have a genetic condition but testing has failed to identify its cause. These conditions can manifest in a range of symptoms and can greatly impact a child’s development, learning, and physical abilities.
In light of Undiagnosed Children’s Day, SWAN UK is calling on families who have unanswered questions about their child’s condition to join their community. This includes families whose children have been diagnosed with global developmental delay, failure to thrive, rare or genetic conditions, unexplained medical, learning, or physical disabilities, or have received inconclusive genetic testing results.
According to Miriam Ingram, SWAN UK Communications and Engagement Manager, having a child with an undiagnosed genetic condition can be a lonely and isolating experience. She states, “SWAN UK brings families together to help them navigate the unknown and connect with others who understand the unique challenges that they face.”
Undiagnosed Children’s Day, a nationwide event, aims to raise awareness of children with undiagnosed genetic conditions. SWAN UK, run by the charity Genetic Alliance UK, is the only dedicated support community for families affected by an undiagnosed genetic condition in the UK.
To learn more about SWAN UK and their services, visit https://geneticalliance.org.uk/swanuk.
