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?
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.
Charlotte loves the outdoors and being active by running and walking, which she does even whilst living with, Osteogenesis Imperfecta, more commonly known as Brittle Bone Disease. This is her story of how it doesn't stop her doing the things she loves.
Alana was taken to the NICU immediately from birth causing a lot of worry to her family. Now, years later, she still has to visit hospital, which sometimes involves a stay. However, this doesn't stop Alana bringing so much joy to her family. Read all about her journey so far, told by her mum.
