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.
Featured
Following our extensive Future for Rare campaign, we are proud to publish Future for Rare: A new vision for rare conditions policy in the UK.
In 2020, Celine Lewis, a behavioural scientist who previously worked at Genetic Alliance UK, embarked on a project to look at the delivery of whole genome sequencing in the NHS (the Genomic Medicine Service, or GMS). The focus was on how well the GMS is working in the diagnosis of rare diseases in children in England. It examined how the new service was rolled out, how prepared healthcare professionals felt, communication practices, parents’ experiences, and psychological impacts. Here she explains some of the work she and her team conducted and the key findings.
We’re pleased to share Genetic Alliance UK's new policy report, 'Time to Decide: Learning from international approaches to newborn screening decision-making'
Yesterday (3 July 2025) the government released 'Fit for the future: 10 Year Health Plan for England'. We've analysed the plan, exploring its potential and pinpointing areas where community involvement is crucial to ensure equitable, patient-centred care. Read our initial thoughts and conclusions below.
Today marks a pivotal moment for healthcare in England as the government prepares to launch its 10-Year Health Plan.
Genetic Alliance UK responds to the Government’s newborn sequencing announcement
10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
Nick Meade has been appointed as the Chief Executive of Genetic Alliance UK, taking up his new role on Thursday 1 May 2025.
Rosie was born in April 2022, and for the first 16 weeks things her family lived in their "new family unit" bubble. Rosie's mum shares what happened next.
Bex is mum to 6-year-old Jackson, the youngest of three boys. Jackson has a genetic/neurological condition so rare they have yet to find a name for it. This means Jackson has complex medical, physical, and learning disabilities.
