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.

Our Rare Disease Day 2025 event pages are now live

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To recognise Rare Disease Day 2025, our community will be coming together at these events with parliamentarians, health professionals, policymakers, researchers, people affected by rare conditions and support organisations.

An open letter to the new Government:

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Genetic Alliance UK have written an open letter to the new Government, calling for a renewed commitment to supporting people with genetic, rare and undiagnosed conditions in the UK. 

A ‘Manifesto for rare diseases’ ahead of coming General Election

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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.

Support Genetic Alliance UK today

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For Rare Disease Day 2024 we want to raise £17,000 to support the 1 in 17 people in the UK who will be affected by a rare condition during their lifetime