PTEN UK & Ireland ​Patient Group

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, ….

Get Involved

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

Patient Day 2019 – Registrations Open

Registration is now open for the next PTENUKI Patient Day. All welcome, register now!! Saturday[...]

14
Jul

South West Support Group

The South West region support group is proud to announce it’s first “meet and greet/[...]

08
Jul

Patient Group PTENUKI reflects on achievements on its third rare disease day

PTENUKI: making connections First established in 2016, PTENUKI is making great strides to help patients[...]

27
Feb

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 Newsletter – Summer 2018

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

07
Aug

Michelle and Lexy’s Patient Story Video

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

02
Aug

First International PTEN Symposium

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

13
Jul

PTEN UK & Ireland Patient Group

2 weeks ago

Thanks to Rare Revolution Magazine for helping to raise awareness!Welcome to our #tuesdaytakeover! The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing PHTS education, supporting patients, and by raising awareness. PHTS includes Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), PTEN-related Proteus syndrome (PS), and Proteus-like syndrome.

www.ptenfoundation.org

#ptenawarenessmth #breastcancer #pten #autism #tuesdaytakeover #pten #phts #raredisease #hereditarycancer ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 weeks ago

Thought this may be of interest to our members. ... See MoreSee Less

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PTEN UK & Ireland Patient Group

4 weeks ago

Our families are at the center of all we do. We believe in treatments and better care for you. #ptenawareness #pten ... See MoreSee Less

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