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.
There are over 400,000 people in Scotland and over 180,000 people in Wales living with a genetic, rare or undiagnosed condition. For too many of them, Scotland’s NHS and social care system is failing to deliver equitable care.
What is it like to go for years no knowing what is wrong with your child? Read Freya's story.
Eti's mum Hana shares her family's story of how having a child with an undiagnosed genetic condition impacts their family
SWAN UK is launching new videos for healthcare professionals this Undiagnosed Children's Day on Friday 24 April 2026.
After a phone call revealed his baby daughter had cystic fibrosis, Huw reflects on the shock, hope, and the urgent need for fairness in rare disease care.
New report on how to address structural and cultural barriers to PPIE in academic research
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
Undiagnosed genetic conditions can impact children in very different ways. As a result their impact on you and your family can also vary widely.
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.
