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.
Featured
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.
Featured
From her birth in 2022, Violet had many tests done. In 2023 she was diagnosed with TBCK syndrome. Violet's case was presenting as severe and life limiting. At 11 months old, she passed away. This is her story.
Chapman was born blind, has speech difficulties, learning struggles, and symptoms of autism. Despite these hurdles and the absence of a clear diagnosis, he managed to become a talented pianist, winning awards at a competition in Taiwan.
Becca's son, Elliot, has been diagnosed with multiple things since he was bor. From a quadricuspid pulmonary valve, and ventricular septal defect after birth. To sensory processing disorder, speech delay and ADHD tendencies and anxiety, all of which led to challenging behaviour but no formal diagnosis
In 2019 George began to feel unwell with constant infections, fatigue and gut symptoms which led to a glandular fever diagnosis. And finally an MCAS, Mast Cell Activation Syndrome diagnosis.
In May 2021, Grant's life changed forever. Sadly, during an emergency c-section his sister, Jess, passed away. He wants Jess’s story to help others, in the hope no one experiences what his family went through.
