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We’ve just launched our new buddy support scheme and local meet-up groups, click below to find out more…
Find out more about PTENUKI and what we’re doing to help people affected by PHTS.
Patient Group PTENUKI reflects on achievements on its third rare disease day
The fourth national PTEN / PHTS patient day held on 24th November 2018 was attended by over 80 people.
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….
Registration is now open for the next PTENUKI Patient Day. All welcome, register now!! Saturday[...]
The South West region support group is proud to announce it’s first “meet and greet/[...]
PTENUKI: making connections First established in 2016, PTENUKI is making great strides to help patients[...]
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[...]
On behalf of the charity I am delighted to attach to our Summer Newsletter with[...]
Michelle and Lexy share their story and hopes for the future…[...]
Our Trustee of Fundraising Kelly tells us about her recent trip to the US to[...]
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Support the PTEN Patient group and work we do to help the UK & Ireland to understand and manage the condition.