Patient Stories

Article Adam’s one man mission to get a diagnosis for his children Read Adam's story about seeking a diagnosis for his children who were the first in the UK to be diagnosed with CRELD1.

Article Andrea is determined to raise awareness of Lynch Syndrome I’m thankful that I don’t have to go through what Mum had to.

Article Sheila & Mark’s VHL journey I’ve had 27 surgeries in 27 years……and counting

Article Alan’s Lynch Syndrome story Genomics has helped me to understand why my family keep getting cancer

Article Mel Dixon : one parents story Discovering our children have a rare genetic mutation has opened new doors for the future

Article Kirsty’s experience of being diagnosed with a rare disease When Kirsty was diagnosed there were only 60 other people in the world with the same condition as her.

Article Tracy’s talks to us about Lynch Syndrome “That decision to get tested opened a giant can of worms, but it saved my family from any further loss.”

Article Emma shares her Lynch story I’m grateful that I’ve been diagnosed with a genetic condition.

Article Hope has a rare condition called KBG Syndrome It was a huge relief to get a diagnosis, even if it wasn’t the news we wanted to hear.

Article Anita talks to us about Lynch Syndrome If I hadn’t had the test, I would have carried that constant background worry with me forever.