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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….
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[...]
Ellie is in her 20’s and shares her experience. When and how did you first[...]
Mike is in his 60’s and shares his experience. When and how did you first[...]
After the success of our Patient Day last year in London, we are organising another[...]
We’re delighted to have launched our new website for patients and families affected by PTEN[...]
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PTEN UK & Ireland Patient Group
2 weeks ago
WHAT A DAY!! 🤗🙋♂️🙋♀️🙋♂️🙋♀️ Thank you to everyone who came... patients, carers, researchers, clinicians, everyone!!! 👩💻👨💻Anyone who missed it don't worry a write up and video will be circulated soon!✍✍For everyone who came! Let us know how you found it! Please give your opinion on the day using the link here: docs.google.com/forms/d/e/1FAIpQLSeCX-HqmT1A7IzilQhEKBtR2nhJCWtgk5xNvRgQh3dUfRu6Sg/viewform?usp=s... ... See MoreSee Less
2018 patient day is underway with the Q&A panel. The full write up will be on the website soon. ... See MoreSee Less
2 months ago
Worth a read this International PTEN Hamartoma Tumor Syndrome Awareness Day ... See MoreSee Less
A letter to PTEN Deletion
Support the PTEN Patient group and work we do to help the UK & Ireland to understand and manage the condition.
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