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
Genetic Alliance UK is looking for a Treasurer and up to three Trustees to join our enthusiastic and committed Board during 2025, as part of our Trust Board succession planning
Featured
Dylan lives with TBR1 related disorder, a condition which means he will need support for the rest of his life. His mum, Jemma, talks about the challenges and worries of having a child with a rare condition but also the joys it can bring.
If you know of an early career researcher who involves your community effectively in their research, let them know about this new award.
Luis is diagnosed with Nascimento X-linked intellectual disability. Now his family is doing all they can to raise awareness and build a community for others. This is their story
Mark Flannagan has been appointed as the new Chief Executive of Genetic Alliance UK, taking up his new role on Monday 2 September 2024.
Keir lives with Poland syndrome, characterised by under-developed or missing chest muscle. After years of feeling uncomfortable with his body Keir is now hoping to win powerlifting championships across the world and show that nothing is impossible when living with a rare condition.
Elizabeth has ocular Lambert-Eaton myasthenic (LEMS). It took 3 years to receive a diagnosis. In that time she received several misdiagnoses and ended up having to take early retirement. Learn more about myasthenia by visiting Genetic Alliance UK member, MyAware’s website.
Nisha has Congenital Myasthenia Syndrome. In this blog she shares the stats around her story and answers questions on what life is like with her condition. June is Myasthenia Awareness Month, join in by visiting Genetic Alliance UK member, MyAware's website.
Genetic Alliance UK's Chair Elizabeth (Liz) Porterfeld has been awarded a Member of the Order of the British Empire (MBE) for services to people with rare diseases in the King's Birthday Honours List on Saturday 15 June, 2024.
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.
