Blogs

PTENUKI at the The PI3K-AKT-mTOR-PTEN pathway meeting in Barcelona

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

PTEN UK & Ireland Patient day Summary

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

South West Support Group

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

Pten patient story – Yvonne

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

The Power of the Parent Voice

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

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 ...

My genes may be as reliable as my Primark jeans but they make me … me!

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

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 ...

Michelle and Lexy’s Patient Story Video

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

First International PTEN Symposium

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

David’s Patient Story Video

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

PTEN patient stories – Ross

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

PTEN patient stories – Derek

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

PTENUKI Patient Day Nov 2017

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

PTEN patient stories – Ellie

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

PTEN patient stories – Mike

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