NORD Member

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

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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
🎥 Patient Day 2025 – Highlights Video 🎥A huge thank you to everyone who joined us for our recent PTENUKI Patient Day 💙 We’re so grateful to have shared the day with such an inspiring and supportive community.We hope you found the sessions helpful, the connections meaningful, and the experience empowering. 💬✨Check out our short video capturing some special moments from the day – we loved every minute, and we hope you did too! 🎬👇#PTENUKI ... See MoreSee Less

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PTEN UK & Ireland Patient Group

1 month ago

PTEN UK & Ireland Patient Group
🌟 We’re thrilled to share that PTENUKI has received a generous grant from Jeans for Genes to help support our core running costs as a charity! 💙This support means the world to us and will help us continue advocating, supporting, and connecting those affected by PTEN Hamartoma Tumour Syndrome across the UK.A huge thank you to the amazing team at Jeans for Genes UK 👖 for believing in our work and helping to keep our mission going strong.👉 Check out the incredible work they do to support genetic disorder charities like ours: www.jeansforgenes.org#PTENUKI ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 months 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

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