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

About PHTS

PTEN Hamartoma Tumour Syndrome (PHTS, often shortened to PTEN) is a rare genetic condition. It is thought to affect around 200-300 people in the UK, ….
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Want to get involved and see what’s it all about or just have someone to talk to if you have been affected by any of the topics covered here….
Latest news
PTEN patient stories – Sarah

Sarah shares her experience When and how did you first get diagnosed?  I was first diagnosed[...]

16
Aug
PTENUKI Patient Day 2018

Yes folks, we are organising another patient day for the UK and Ireland! All welcome,[...]

07
Aug
PTENUKI Newsletter – Summer 2018

On behalf of the charity I am delighted to attach to our Summer Newsletter with[...]

07
Aug
First International PTEN Symposium

Our Trustee of Fundraising Kelly tells us about her recent trip to the US to[...]

13
Jul
PTEN patient stories – Ross

Ross is in his 20’s and shares his experience. When and how did you first[...]

24
May
PTEN patient stories – Derek

Derek is in his 50’s and shares his experience 1. When and how did you[...]

29
Apr
PTENUKI Patient Day Nov 2017

The third national PTEN / PHTS patient day held on 11th November 2017 was attended[...]

08
Feb
PTEN patient stories – Ellie

Ellie is in her 20’s and shares her experience. When and how did you first[...]

18
Oct
PTEN patient stories – Mike

Mike is in his 60’s and shares his experience. When and how did you first[...]

20
Sep
PTENUKI Patient Day Sat 11th Nov 2017

After the success of our Patient Day last year in London, we are organising another[...]

09
Aug
Website Launch – Nov 2017

We’re delighted to have launched our new website for patients and families affected by PTEN[...]

09
Aug
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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group

WHAT A DAY!! 🤗

🙋‍♂️🙋‍♀️🙋‍♂️🙋‍♀️ Thank you to everyone who came... patients, carers, researchers, clinicians, everyone!!!

👩‍💻👨‍💻Anyone who missed it don't worry a write up and video will be circulated soon!

✍✍For everyone who came! Let us know how you found it! Please give your opinion on the day using the link here: docs.google.com/forms/d/e/1FAIpQLSeCX-HqmT1A7IzilQhEKBtR2nhJCWtgk5xNvRgQh3dUfRu6Sg/viewform?usp=s... ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group

2018 patient day is underway with the Q&A panel.
The full write up will be on the website soon. ... See MoreSee Less

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