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.
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What does it mean to have a genetic condition, how are genetic conditions diagnosed and why do some genetic conditions remain undiagnosed? Watch our animations to find out.
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We’re pleased to share Genetic Alliance UK's new policy report, 'Time to Decide: Learning from international approaches to newborn screening decision-making'
Receiving a diagnosis can help bring clarity. In our recent blog we hear about a daughter who has been diagnosed with FOXP2 related speech and language disorder. We learn about the challenges that comes with this rare condition, and about the advancements in research and incredible organisations that are around to support people with this conditions.
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.
Sally is 19 years old and has Spinal Muscular Atrophy type 2. She is a boccia player on the Boccia UK World Class Programme and making her Paralympic debut in Paris August 2024, before she starts university to study Music in September. In this blog Sally talks about her boccia journey to date and how people can get involved.
Luis is diagnosed with Nascimento X-linked intellectual disability. Now his family is doing all they can to raise awareness and build a community for others. This is their story
Mark Flannagan has been appointed as the new Chief Executive of Genetic Alliance UK, taking up his new role on Monday 2 September 2024.
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.
