NORD Member

PTENUKI is a member of the National Organization for Rare Disorders (NORD) network. 

Latest news
Cover for PTEN UK & Ireland Patient Group
402
PTEN UK & Ireland Patient Group

PTEN UK & Ireland Patient Group

PTENUKI is a patient group which aims to help and support patients, carers, families affected by PTEN

PTEN UK & Ireland Patient Group

4 weeks ago

PTEN UK & Ireland Patient Group
📣 Speaker Spotlight: Professor Kristien BoelaertWe’re thrilled to announce that Professor Kristien Boelaert will be joining us at the PTENUKI Patient Day next week! 🌟Kristien is an internationally recognised expert in thyroid diseases and will be leading a breakout session on Thyroid Issues in PHTS — a must-attend for anyone navigating thyroid-related aspects of the syndrome.👉 For more information on our other amazing speakers, don’t forget to check out our website! ptenuki.org/ptenuki-patient-day-2025/ #PTENUKI ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

4 weeks ago

PTEN UK & Ireland Patient Group
Joining us at PTENUKI Patient Day is Dr. Joe Christopher from Addenbrooke’s Hospital and the University of Cambridge, where he’s conducting cutting-edge research into inherited cancer risk.Also affiliated with the Wellcome Sanger Institute, Dr. Christopher’s work is key to shaping the future of cancer genetics and personalised medicine.🎤 Don’t miss his session—register now: ptenuki.org/ptenuki-patient-day-2025 ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

1 month ago

PTEN UK & Ireland Patient Group
We’re excited to welcome Tom Pepper, Chief Executive Officer of PTEN Research, as a speaker at our 2025 Patient Day!Tom is deeply committed to advancing research and collaboration to improve outcomes for people affected by PTEN Hamartoma Tumour Syndrome.This is your chance to hear directly from a key voice in PTEN research and advocacy.✅ Sign up while spaces are available: ptenuki.org/ptenuki-patient-day-2025#PTENResearch #PTENUKI ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Donate

Support the PTEN Patient group and work we do to help the UK & Ireland to understand and manage the condition.