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.
10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
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Nick Meade has been appointed as the Chief Executive of Genetic Alliance UK, taking up his new role on Thursday 1 May 2025.
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.
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.
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?
An update on the CEO of Genetic Alliance UK.
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.
If you know of an early career researcher who involves your community effectively in their research, let them know about this new award.
