26th April 2024
In support of “Undiagnosed Children’s Day” (26 April 2024), we are delighted to share this Voices blog by Miriam Ingram, Communications and Engagement Manager at SWAN UK (Syndromes Without A Name), to help more families affected by a syndrome without a name to find SWAN UK sooner.
‘Joining SWAN UK right at the beginning of our journey was an absolute lifeline as we waded through the relentless waves of we don’t know. Nobody here ever judged my feelings, but simply acted quite literally as my port in the storm with a shared understanding of not knowing. I’ve made friends, both local and many miles away, who I know will remain friends for life.’ – SWAN UK parent
Undiagnosed Children’s Day – Friday 26 April 2024
Undiagnosed Children’s Day is a nationwide event celebrated every year on the last Friday in April. It’s a chance to spread the word about what it means to be affected by a syndrome without a name (also known as an undiagnosed genetic condition), raise awareness of SWAN UK, and reach out to more families who need support.
SWAN UK
SWAN UK is the only dedicated support community in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. It is run by the charity, Genetic Alliance UK.
There are around 6,000 children born every year in the UK with a condition likely to remain undiagnosed. SWAN UK has around 4,000 people in its community. People in the SWAN UK community often tell us that they wish they’d found SWAN UK sooner. Before finding SWAN UK, they feel isolated and alone as medical professionals can’t give them any answers as to what is wrong with their child. Without a diagnosis it can be hard to access all kinds of support. SWAN UK is a lifeline to these families. We offer peer-to-peer support through our online forums where families are able to offer support to one another and ask questions, so they know they’re not alone. We provide virtual events such as virtual coffee meet ups for parents as well as face-to-face events for parents and families. We work with and signpost to other relevant organisations so that families feel informed and supported while waiting for a diagnosis. We collaborate with healthcare professionals such as health visitors to raise awareness of the unique challenges faced by families affected by a syndrome without a name. We do this by sharing the experiences of families affected by undiagnosed genetic conditions.
The following questions may be helpful to identify families who could benefit from joining SWAN UK.
If people answer ‘yes’ to any of the following questions, SWAN UK is here to help:
- Have you been told your child has global developmental delay (GDD) or failure to thrive but not told the reason why?
- Is your child suspected to have a rare or genetic condition but more testing is needed to try and identify which one?
- Does your child have unexplained medical, learning or physical disabilities?
- Has your child received genetic testing results that were negative or with a variant of unknown significance?
- Did your child take part in the Deciphering Developmental Disorders (DDD) study or the 100,000 Genomes Project, but you still don’t have a diagnosis?
This year our aim is to help more families find SWAN UK sooner.
Help us by spreading the word and telling more people about SWAN UK
- Signpost people to our website: geneticalliance.org.uk/swanuk
- Follow SWAN UK on social media and share our content.
- Share a selfie of yourself wearing pink or one of our images to show your support.
- Find out more about undiagnosed genetic conditions and the wider work of Genetic Alliance UK by visiting our website: geneticalliance.org.uk
How to join
Families of children and young adults (up to the age of 25) can join the SWAN UK community for free. Visit geneticalliance.org.uk/swanuk.
