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Last year PTENUKI got 70+ PTEN patients, family members and proffessionals together in London for a day of learning, support, collaboration and looking to the future.
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, ….
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….
At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful[...]
Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in[...]
It is said over 3.5million people in the UK have over 7,000 rare diseases, 85%[...]
The fourth national PTEN / PHTS patient day held on 24th November 2018 was attended[...]
If I think back to my diagnosis 5 years ago when I was told I[...]
Sarah shares her experience When and how did you first get diagnosed? I was first diagnosed[...]
Yes folks, we are organising another patient day for the UK and Ireland! All welcome,[...]
On behalf of the charity I am delighted to attach to our Summer Newsletter with[...]
Our Trustee of Fundraising Kelly tells us about her recent trip to the US to[...]
Ross is in his 20’s and shares his experience. When and how did you first[...]
Derek is in his 50’s and shares his experience 1. When and how did you[...]
The third national PTEN / PHTS patient day held on 11th November 2017 was attended[...]
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Support the PTEN Patient group and work we do to help the UK & Ireland to understand and manage the condition.
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