News and stories

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.

The Big Sunflower Project


The Big Sunflower Project aims to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy by asking people to grow a sunflower and share their sunflower photos online. The project was established in 2011 after founder Toni Abram and her father Mike were diagnosed with centronuclear myopathy.

Me and My ITP


Anthony was diagnosed with ITP in July 2006. In 2024 he realised that the rare auto immune disorder has taken up 28 per cent of his life.

Apparently it was all in my head


Tammy went through lots of tests and people telling her that symptoms were psychological before she finally got her diagnosis of eosinophilic gastroenteritis.

Elle’s story


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.

George’s Mast Cell Activation Syndrome story


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.

Jess’s story


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.