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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Latest news
Pten patient story – Yvonne

At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful[...]

14
Jan
The Power of the Parent Voice

Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in[...]

06
Jan
PTENUKI visits Rare Fest

It is said over 3.5million people in the UK have over 7,000 rare diseases, 85%[...]

20
Dec
PTENUKI Patient Day – Nov 2018

The fourth national PTEN / PHTS patient day held on 24th November 2018 was attended[...]

18
Dec
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[...]

21
Sep
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
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