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.
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.
There are over 400,000 people in Scotland and over 180,000 people in Wales living with a genetic, rare or undiagnosed condition. For too many of them, Scotland’s NHS and social care system is failing to deliver equitable care.
What is it like to go for years no knowing what is wrong with your child? Read Freya's story.
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).
Eti's mum Hana shares her family's story of how having a child with an undiagnosed genetic condition impacts their family
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.
SWAN UK is launching new videos for healthcare professionals this Undiagnosed Children's Day on Friday 24 April 2026.
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.’
