Genetic Alliance UK responds to the Government’s newborn sequencing announcement
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Genetic Alliance UK responds to the Government’s newborn sequencing announcement
News and stories
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.
10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
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10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
England Action Plan launched
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Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, spoke to attendees at the Rare Disease Day Westminster reception yesterday, providing a preview of the 2025 England Rare Diseases Action Plan, launched today. In her speech the minister praised Genetic Alliance UK and our members for the role we’ve taken to inform this plan. So what’s new?
Instagram Saved My Life
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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.
Update from Genetic Alliance UK
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An update on the CEO of Genetic Alliance UK.
Jude’s story
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It took 10 years for Jude to be diagnosed with KBG syndrome. It was a relief for the family to get the diagnosis after so many years of seeking answers. However, they found that not many healthcare professionals had ever heard of KBG syndrome and therefore couldn't offer much support through their journey. When Jude hit secondary education he attended a special school where he flourished, and felt supported. He now has big goals and dreams, despite his condition.
Our Rare Story – FoxP2
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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.
Our Rare Disease Day 2025 event pages are now live
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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.
National conversation to shape NHS 10 Year Plan
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Launch of national conversation to shape the Government’s 10 Year Health Plan Statement from Mark Flannagan, Chief Executive of Genetic Alliance UK
Dylan’s story
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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.
New award for early career researchers working with the rare condition community
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If you know of an early career researcher who involves your community effectively in their research, let them know about this new award.