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.
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.
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.
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.
After a year of unusual development traits and epilepsy, Elijah received the diagnosis of MEF2C Haploinsufficiency Syndrome. Elijah is now 4 years old and life still throws it's challenges for the family. This is their story so far.
Scott, 32, and Jamie McCowan, 28, are brothers and live in Scotland. They both have Duchenne Muscular Dystrophy and they have both achieved incredible careers in the sport of boccia, travelling the world and competing at the Paralympic Games.
For Rare Disease Day, Nerve Tumours UK are raising awareness by focusing on stories that highlight the impact of NF (the group name for Neurofibromatosis Type 1, NF2-related-Schwannomatosis and Schwannomatosis) every day. They want to #MakeNFVisible. This is Liz's story.
