Blogs

South West Support Group

The South West region support group is proud to announce it's first "meet and greet/ planning" session. When? SATURDAY 7th ...
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Pten patient story – Yvonne

At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful PTEN story... Hello everyone, it's ...
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The Power of the Parent Voice

Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in my day to day life ...
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PTENUKI visits Rare Fest

It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment ...
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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 have a significant risk of ...
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PTEN patient stories – Sarah

Sarah shares her experience When and how did you first get diagnosed?  I was first diagnosed because of my niece. When ...
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First International PTEN Symposium

Our Trustee of Fundraising Kelly tells us about her recent trip to the US to represent PTENUKI at the PTEN ...
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PTEN patient stories – Ross

Ross is in his 20's and shares his experience. When and how did you first get diagnosed? Signs where there when ...
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PTEN patient stories – Derek

Derek is in his 50's and shares his experience 1. When and how did you get diagnosed? In late summer ...
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PTENUKI Patient Day Nov 2017

The third national PTEN / PHTS patient day held on 11th November 2017 was attended by over 80 people. Once ...
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