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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Brody, Me & GDD: Laura Rutherford shares her experience of what it was like in the early days when she didn’t have any answers about her son’s development
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Kevin ran the London Landmarks Half Marathon to raise money for SWAN UK and Rare Disease UK. He he tells us about his family’s experience the undiagnosed and rare communities and why he supports our work.
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Jesse, a happy boy who had a wicked sense of humour. Six months before he was taken into intensive care he learnt to walk and managed to walk the length of the Suspension Bridge (now known to the family as Jesse’s Bridge). This is his story.
Stuart has ocular myasthenia gravis. He shares how the diagnosis has affected his life. Learn more about myasthenia and how you can get involved in Myasthenia Awareness Month in June 2024, by visiting Genetic Alliance UK member, MyAware's website.
Lois has myasthenia gravis. Read her story below and learn more about the condition and how to get involved in Myasthenia Awareness month in June 2024, by visiting Genetic Alliance UK member, MyAware's website.
Gem has had many diagnoses over the years, and has had to adjust to what a ‘successful’ day looks like for her.
Neal's journey started in 2012, and led to a diagnosis of Complex Regional Pain Syndrome and Bone Marrow Oedema. Through his journey he has found ways to make his life easier, including being prepared to meet healthcare professionals who have never heard of the condition.
Amber is a doctor and lives with Gitelman syndrome, a condition that causes severe salt wasting. Her position as both a doctor and someone living with a rare condition gives her a unique insight into the rare world. This has been her journey so far.
Jack lives with Tricho Hepato Enteric Syndrome, a rare genetic condition that doesn't have a support charity dedicated to it. A close family friend of Jack's, Sarah, ran the London Marathon in 2024 to raise money for Rare Disease UK. Jack shares their fundraising journey and why they chose our charity to support.
Karen has Pregnancy Associated Osteoporosis. The condition has forced a difficult, limited and restricted life which has been made harder with the lack of well coordinated care. This is her story.
The Parkes family have had to battle and fight for everything since Charlie was born. Not having a diagnosis very often means you don’t tick boxes, making the journey a lot harder. Despite this, Charlie has smashed every goal and expectation anyone has ever had about him.
Jackson has a condition so rare, it remains undiagnosed. He's got a long list of different diagnoses but the cause of his complex needs is still unknown. He also has a list of 23 different specialists helping to find answers. Jackson's mum, Bex, tells their story.
