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Freya’s story
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What is it like to go for years no knowing what is wrong with your child? Read Freya's story.
News and stories
All of the latest news and updates from Genetic Alliance UK can be found below. This includes the release of our latest reports and findings, as well as pieces that our member organisations have requested that we share.
We also share stories, images and experiences from those living with genetic, rare and undiagnosed conditions. Individuals affected by these conditions are at the heart of everything that we do and we want to champion these communities by amplifying their voices, individually and collectively.
If you’d like to have your story included on our website then get in touch.
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Eti’s story
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Eti's mum Hana shares her family's story of how having a child with an undiagnosed genetic condition impacts their family
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SWAN UK launches new videos on Undiagnosed Children’s Day – Friday 24 April 2026
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SWAN UK is launching new videos for healthcare professionals this Undiagnosed Children's Day on Friday 24 April 2026.
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The beginning of our undiagnosed journey
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Brody, Me & GDD: Laura Rutherford shares her experience of what it was like in the early days when she didn’t have any answers about her son’s development
Involvement by design: How to address structural and cultural barriers to PPIE in academic research
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New report on how to address structural and cultural barriers to PPIE in academic research
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New leaflet – Parenting a child with an undiagnosed genetic condition: you and your emotional wellbeing
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Undiagnosed genetic conditions can impact children in very different ways. As a result their impact on you and your family can also vary widely.
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SWAN UK launches new animations
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What does it mean to have a genetic condition, how are genetic conditions diagnosed and why do some genetic conditions remain undiagnosed? Watch our animations to find out.
Rosie – Undiagnosed Children’s Day
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Rosie was born in April 2022, and for the first 16 weeks things her family lived in their "new family unit" bubble. Rosie's mum shares what happened next.
Bex and Jackson – Undiagnosed Children’s Day
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Bex is mum to 6-year-old Jackson, the youngest of three boys. Jackson has a genetic/neurological condition so rare they have yet to find a name for it. This means Jackson has complex medical, physical, and learning disabilities.