As part of our aim to improve patient support we try and raise awareness and provide more accurate and accessible information to patients and families.This #ptenawarenessday we are very excited to announce our upcoming PTEN Power Hour series bringing you the latest information from our community. More info coming soon ...#raredisease #hereditycancer #rarecancersyndrome #ptenawareness #pten #cowdens ... See MoreSee Less
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*EXCITING NEWS* we are delighted to welcome Priyanka Tibarewal as our new Research trustee at PTENUKI! We can't wait to work with Priyanka to bring more updates from the front line of research to our patients and families.We are thrilled to have you as part of the team!! 💪 ... See MoreSee Less
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We are looking for approx.10 of our community to join a video call on WEDNESDAY 19TH OCTOBER AT 7:30PM to discuss the development of a PTEN App that is taking place. We have been asked to provide PTEN patient feedback of it's content and how we envisage using it. We are looking for a good cross section of our community, patients with PTEN and parents of children with PTEN. If you are interested in joining the call please comment below or email me at kelly@ptenuki.org and I will send you the meeting link. Thank you. ... See MoreSee Less
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