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.

Raising awareness – Kevin’s story

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Kevin ran the London Landmarks Half Marathon to raise money for SWAN UK and Rare Disease UK. He he tells us about his family’s experience the undiagnosed and rare communities and why he supports our work.

Rosie – Undiagnosed Children’s Day

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Rosie was born in April 2022, and for the first 16 weeks things her family lived in their "new family unit" bubble. Rosie's mum shares what happened next.

Bex and Jackson – Undiagnosed Children’s Day

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Bex is mum to 6-year-old Jackson, the youngest of three boys. Jackson has a genetic/neurological condition so rare they have yet to find a name for it. This means Jackson has complex medical, physical, and learning disabilities.

Photo by Michał Bożek on Unsplash. A child's hands playing with colourful building blocks

More than you can imagine

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This is Lucy's story which was written about her son who lives with 22Q11.21 Micro Duplication. The story was submitted as part of ‘More than you can imagine: an anthology of rare experiences‘, created for Rare Disease Day 2025.

Photo by Matthias Oberholzer on Unsplash. Taken of the colosseum in Rome

More dance partners than you can imagine

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This is Alan's short story which was submitted to ‘More than you can imagine: an anthology of rare experiences‘, created for Rare Disease Day 2025. It discusses experiences of living with Poland syndrome.

department of health and social care logo

Reintegration of NHS England into the Department of Health and Social Care

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On on 13 March 2025, the Government announced that NHS England will be reintegrated into the Department of Health and Social Care (DHSC). Genetic Alliance UK’s policy team has been working to understand the potential impact of these reforms on individuals and families affected by genetic, rare, and undiagnosed conditions. We would like to thank all the members of our community who have shared their views and concerns.

a selection of a list of approved 28 medicines for access in the NHS since 2015

Changes to NICE ultra-rare pathway

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NICE, the key decision-maker for accessing medicines in England, Wales and Northern Ireland has two pathways for medicines for rare conditions. The criteria to decide which one is used is being updated.

black and white photo of a detectives office

More complicated than you might imagine: ‘The Case of the Confusing Categorisation’

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Written by Abigail Davison-Hoult. This story explores the desire to pigeonhole ourselves and one another to comply with societal rules, but also looks at the difficulties faced when trying to determine the correct category. There is the suggestion of prejudice whether intentional or assumed, particularly in the case of minority populations. Ultimately, the reader needs to use the information given to decide on their version of the outcome of this story.

Government announcement about NHS England

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Today, Prime Minister Keir Starmer, announced that NHS England will be reintegrated into the Department of Health and Social Care (DHSC). This decision is aimed at improving service delivery. Read the full press release from the DHSC.