News and stories

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.

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.

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.

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.

Launch of national conversation to shape the Government’s 10 Year Health Plan Statement from Mark Flannagan, Chief Executive of Genetic Alliance UK

Dylan lives with TBR1 related disorder, a condition which means he will need support for the rest of his life. His mum, Jemma, talks about the challenges and worries of having a child with a rare condition but also the joys it can bring.

If you know of an early career researcher who involves your community effectively in their research, let them know about this new award.

Genetic Alliance UK have written an open letter to the new Government, calling for a renewed commitment to supporting people with genetic, rare and undiagnosed conditions in the UK. 

Elizabeth has ocular Lambert-Eaton myasthenic (LEMS). It took 3 years to receive a diagnosis. In that time she received several misdiagnoses and ended up having to take early retirement. Learn more about myasthenia by visiting Genetic Alliance UK member, MyAware’s website.