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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We’re pleased to share Genetic Alliance UK's new policy report, 'Time to Decide: Learning from international approaches to newborn screening decision-making'
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Yesterday (3 July 2025) the government released 'Fit for the future: 10 Year Health Plan for England'. We've analysed the plan, exploring its potential and pinpointing areas where community involvement is crucial to ensure equitable, patient-centred care. Read our initial thoughts and conclusions below.
Launch of national conversation to shape the Government’s 10 Year Health Plan Statement from Mark Flannagan, Chief Executive of Genetic Alliance UK
Genetic Alliance UK and the SHCA have come together ahead of the General Election to develop a joint manifesto for people with rare conditions. While they are individually rare, collectively rare conditions are common – 1 in 17 people are affected, equating to 3.5 million in the UK alone.
