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
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.
Involvement by design: Opportunities to champion our report’s recommendations
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Since publishing our report ‘Involvement by design: How to address structural and cultural barriers to PPIE in academic research’ in January 2026, we have been encouraged by the response from across the research community.
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.
New report by LifeArc Hub’s Policy Working Group: More trials, better data, faster access
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We're delighted to share a new report that Genetic Alliance UK has developed on behalf of the Policy Working Group of the LifeArc Translational Centres for Rare Disease Hub: ‘More trials, better data, faster access: Opportunities to innovate in translational research for rare conditions.’
Welcome to Sharon Hodgson MP, Parliamentary Under-Secretary of State in the Department for Health and Social Care
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Genetic Alliance UK welcomes the appointment of Sharon Hodgson MP as Parliamentary Under-Secretary of State in the Department for Health and Social Care. Under this portfolio, the Minister will be responsible for rare diseases.
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.
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
Remembering rare conditions – Huw’s story
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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.
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.