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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Today, Prime Minister Keir Starmer, announced that NHS England will be reintegrated into the Department of Health and Social Care (DHSC). This decision is aimed at improving service delivery. Read the full press release from the DHSC.
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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?
Jazz is part of the SWAN UK community, SWAN stands for syndrome without a name, a condition so rare that it doesn't have a name. In this blog she talks about her having a son with an undiagnosed condition.
A rare condition is defined as one that affects fewer than one person in 2,000. But collectively, rare conditions are more common than you might imagine. 1 in 17 of the UK population will be affected at some point in their lives.
ITN Business partners with Genetic Alliance UK to produce news-style programme ‘Rare Conditions: The Stories Behind the Stats’
Scott, 32, and Jamie McCowan, 28, are brothers and live in Scotland. They both have Duchenne Muscular Dystrophy and they have both achieved incredible careers in the sport of boccia, travelling the world and competing at the Paralympic Games.
For Rare Disease Day, Nerve Tumours UK are raising awareness by focusing on stories that highlight the impact of NF (the group name for Neurofibromatosis Type 1, NF2-related-Schwannomatosis and Schwannomatosis) every day. They want to #MakeNFVisible. This is Liz's story.
For Rare Disease Day 2024 we want to raise £17,000 to support the 1 in 17 people in the UK who will be affected by a rare condition during their lifetime
Over 2 pregnancies, Jane lost 5 inches in height due to the rare condition, Pregnancy-and-Lactation Osteoporosis. It took years to diagnose and there wasn't much support until she found a group on Facebook. Read Jane's story below.
Helen is a SWAN UK Parent Rep for Nottingham, Oxfordshire and Berkshire. After 19 years her son was diagnosed with hypermobile Ehlers-Danlos syndrome.
You can now fundraise for Genetic Alliance UK, SWAN UK and Rare Disease UK on our new JustGiving page.
