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.

Coordinating my care – an ongoing personal battle

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Karen has Pregnancy Associated Osteoporosis. The condition has forced a difficult, limited and restricted life which has been made harder with the lack of well coordinated care. This is her story.

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.