Inexpressible suffering but indistinguishable hope
Date:
Jonathan's submission to 'More than you can imagine: an anthology of rare experiences', created for Rare Disease Day 2025
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.
Jesse’s Story – Undiagnosed Children’s Day
Date:
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.
Reintegration of NHS England into the Department of Health and Social Care
Date:
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.
Changes to NICE ultra-rare pathway
Date:
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.
More complicated than you might imagine: ‘The Case of the Confusing Categorisation’
Date:
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
Date:
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.
England Action Plan launched
Date:
Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, spoke to attendees at the Rare Disease Day Westminster reception yesterday, providing a preview of the 2025 England Rare Diseases Action Plan, launched today. In her speech the minister praised Genetic Alliance UK and our members for the role we’ve taken to inform this plan. So what’s new?
Instagram Saved My Life
Date:
This year’s theme for Rare Disease Day 2025 is ‘More than you can imagine’ and Tilly's story really has turned out more than she could ever have imagined; a story which proves rare does not mean impossible.
Update from Genetic Alliance UK
Date:
An update on the CEO of Genetic Alliance UK.