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
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
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 UK & Ireland Patient Group

7 months ago

PTEN UK & Ireland Patient Group

Hear more about the work of @PTENUKI and the difference we make to patients and families in this video filmed at our our amazing #patientday last year: youtu.be/_Wbcc-Z8Tgw #PTEN #Cowdens #PHTS #PTENUKI ... See MoreSee Less

PTENUKI Patient Group

PTENUKI is a patient group which aims to help and support patients, carers and families affected by the PTEN / PHTS rare genetic condition

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