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.
We’re pleased to share Genetic Alliance UK’s new research report, Independent Evaluation of the Generation Study: Views of support organisations
As the new Governments form in each country, Genetic Alliance UK is starting to reach out to members of each parliament for their support to join a Cross-Party Group (CPG) on Genetic, Rare and Undiagnosed Conditions.
Aiza was diagnosed with Molybdenum Cofactor Deficiency (MoCD), an ultra-rare genetic condition, just days after birth. Through sharing Aiza’s journey, her family hopes to raise awareness of rare conditions and help others facing similar paths feel less alone.
A flurry of policy activity is underway that concerns access to innovative new medicines in the UK. We know this is atopic of importance for many of our member organisations, including the MND Association, which recently authored an article on challenges it had experienced with Early Access to Medicines Schemes (EAMS).
Since publishing our report ‘Involvement by design: How to address structural and cultural barriers to PPIE in academic research’ in January 2026, we have been encouraged by the response from across the research community.
We're delighted to share a new report that Genetic Alliance UK has developed on behalf of the Policy Working Group of the LifeArc Translational Centres for Rare Disease Hub: ‘More trials, better data, faster access: Opportunities to innovate in translational research for rare conditions.’
Genetic Alliance UK welcomes the appointment of Sharon Hodgson MP as Parliamentary Under-Secretary of State in the Department for Health and Social Care. Under this portfolio, the Minister will be responsible for rare diseases.
The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.
NICE publishes first quality standard to improve care for people with rare conditions
