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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New report on how to address structural and cultural barriers to PPIE in academic research
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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
Tammy went through lots of tests and people telling her that symptoms were psychological before she finally got her diagnosis of eosinophilic gastroenteritis.
Elle has been diagnosed with Postural Orthostatic Tachycardia Syndrome, Elhers Danlos type 3 and Gastroesophageal reflux disease. However this hasn't stopped her achieving her goals.
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.
