One of our main aims as a patient group is to provide support to our PTEN community across the UK ...

In September our trustees Ellie and Priyanka had the opportunity to represent PTEN-UKI at ‘The PI3K-AKT-mTOR-PTEN pathway: a new era ...

Summary of the day For the first time since 2019, over 100 people in the PTENUKI community joined together in ...

To mark Children's Mental Health Week we are sharing the work of Dr Alice Welham and team from the University ...

The South West region support group is proud to announce it's first "meet and greet/ planning" session. When? SATURDAY 7th ...

At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful PTEN story... Hello everyone, it's ...

Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in my day to day life ...

It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment ...

If I think back to my diagnosis 5 years ago when I was told I have a significant risk of ...

Sarah shares her experience When and how did you first get diagnosed?  I was first diagnosed because of my niece. When ...

Michelle and Lexy share their story and hopes for the future… ...

Our Trustee of Fundraising Kelly tells us about her recent trip to the US to represent PTENUKI at the PTEN ...

David told us his story as a PTEN/PHTS patient from childhood, through diagnosis, to now… ...

Ross is in his 20's and shares his experience. When and how did you first get diagnosed? Signs where there when ...

Derek is in his 50's and shares his experience 1. When and how did you get diagnosed? In late summer ...

The third national PTEN / PHTS patient day held on 11th November 2017 was attended by over 80 people. Once ...

Ellie is in her 20's and shares her experience. When and how did you first get diagnosed?  They found out ...

Mike is in his 60's and shares his experience. When and how did you first get diagnosed?  Approx 2013 What symptoms ...