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.
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.
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.
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.
Jonathan's submission to 'More than you can imagine: an anthology of rare experiences', created for Rare Disease Day 2025
Jesse, a happy boy who had a wicked sense of humour. Six months before he was taken into intensive care he learnt to walk and managed to walk the length of the Suspension Bridge (now known to the family as Jesse’s Bridge). This is his story.
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.
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.
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.
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.
