Category Archives: Blog

Participants wanted for an online survey – Behavioural, developmental and psychological characteristics in children with germline PTEN mutations: A carer report study

To mark Children’s Mental Health Week we are sharing the work of Dr Alice Welham and team from the University of Leicester on the behavioural and psychological effects of PTEN in children Watch the video to find out more and email: if you would like to take part in the study.

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 […]

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 […]