Category Archives: Blog

PTENUKI visits Rare Fest

It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment for their condition. The Cambridge Rare Disease Network works to build a community to address the unmet needs of these people living with rare conditions. This month saw their Annual Rare Fest, which is a […]

PTEN patient stories – Sarah

Sarah shares her experience When and how did you first get diagnosed?  I was first diagnosed because of my niece. When she was born, they noticed she had a big head so they did some tests, which led to my sister being told that she had cowden syndrome. Both my sister and her boyfriend were tested […]

First International PTEN Symposium

Our Trustee of Fundraising Kelly tells us about her recent trip to the US to represent PTENUKI at the PTEN Hamartoma Tumor Syndrome Foundation symposium   I had the honour of representing PTENUKI at the first international symposium held in Alabama in March 2018. As a parent of a PTEN patient as well as a founding […]