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, ….

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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

PTENUKI Newsletter – Summer 2019

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

02
Sep

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

PTENUKI Newsletter – Summer 2018

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

07
Aug

Website Launch – Nov 2017

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

09
Aug

PTEN UK & Ireland Patient Group

1 week ago

We are looking for two or three patients or parents of children with pten who would like to share their story at our next face to face PTEN patient day in July. If you are interested please message me on kelly@ptenuki.org thanks! ... See MoreSee Less

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PTEN UK & Ireland Patient Group

1 week ago

Timeline photosMental Health Awareness Week starts today! Let's tackle loneliness together. Start by saying #IveBeenThere:1. Share a photo of a time you felt lonely and nobody knew. 2. Add the hashtags #IveBeenThere and #MentalHealthAwarenessWeek.3. Tag @mentalhealthfoundation.Sharing your story can help you and others 💚. ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 weeks ago

As part of #ptenawarenessmonth, I wanted to let everyone know about our podcast series. Some of our wonderful pten family have come forward to share their stories so please follow the link to take a listen. If you would like to take part, whether you are a patient or a family member of someone with pten, please comment on this post and someone will be in touch to discuss things further. ptenuki.org/podcasts/ ... See MoreSee Less

Podcasts | PTEN UK & Ireland Patient Group

ptenuki.org

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About PHTS

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Latest news

PTENUKI Newsletter – Summer 2019

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

PTENUKI Newsletter – Summer 2018

Website Launch – Nov 2017