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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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New guidance published on standards of care for rare conditions
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NICE publishes first quality standard to improve care for people with rare conditions
An update on access to medicines policy for rare conditions
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A flurry of policy activity is underway that concerns access to innovative new medicines in the UK. We know this is atopic of importance for many of our member organisations, including the MND Association, which recently authored an article on challenges it had experienced with Early Access to Medicines Schemes (EAMS).
Latest England Action Plan out
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The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.
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The Guardian shines a spotlight on the experiences of people living with rare genetic conditions
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Ahead of our RDD 2026 report launching tomorrow, we’re so glad to see The Guardian shining a spotlight on the experiences of people living with rare genetic conditions, and we’re thrilled that Emma and Ali, who so powerfully shared their stories at our recent Scottish parliamentary reception, are also featured.
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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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