On Friday 19 April, 2024, a support organization for families with undiagnosed genetic conditions in the UK, SWAN UK (syndromes without a name), will be raising awareness for Undiagnosed Children’s Day. This national event aims to shed light on the struggles and challenges faced by the estimated 6,000 children born each year in the UK with an undiagnosed genetic condition.
According to SWAN UK’s Communications and Engagement Manager, Miriam Ingram, families with undiagnosed children face a difficult journey as medical professionals are unable to provide answers and support. This can leave families feeling isolated and without access to necessary resources.
One parent, Katie, whose 2-year-old son Stanley has an undiagnosed genetic condition, shares her experience: “As a parent when you are told that tests are showing that everything is clear, and it is believed your child has an unknown genetic condition that could take up to a lifetime to diagnose, it’s very overwhelming. Life can feel lonely and isolating.”
Katie and Stanley have found a sense of community and support through SWAN UK, which offers peer-to-peer support, events, information, and a sense of belonging for families with undiagnosed children. “When we found SWAN UK it made us realise that we are not alone in this journey. Stanley and I have already made some friends in the SWAN UK community, and we look forward to getting more involved as time goes on,” says Katie.
SWAN UK, run by the charity Genetic Alliance UK, is the only dedicated support community for families affected by undiagnosed genetic conditions in the UK. They work with healthcare professionals to educate them about undiagnosed genetic conditions and share the challenges faced by the SWAN UK community.
Undiagnosed Children’s Day is an opportunity to spread awareness and support for these families who often face an unknown and uncertain future. For press enquiries and to arrange an interview with a parent, please contact Miriam Ingram at miriam.ingram@geneticalliance.org.uk.
This article was distributed by https://pressat.co.uk/.
