Cover for PTEN UK & Ireland Patient Group
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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

⭐ Rare Disease Day 2024!!⭐ It's great to see our charity trustees representing PTEN at the Genetic Alliance Westminster reception. 💫 Championing the rare! 💫 Thank you all for your support!! 👉 Check out the full report from Genetic Alliance here - buff.ly/430eN#GeneticAlliancei#rarediseaseday2024y#ShareYourColoursl#PTENUKIENUKI ... See MoreSee Less
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📢 ANNOUNCEMENT 📢 ⭐ If you sent us an application for the Cost of Living Grant today is the day you find out if you were successful! ☎️ Keep a close eye on your phone as we will be calling those of you who will be receiving a grant! ... See MoreSee Less
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⭐ Rare Disease Day 2024⭐ We've already received pictures of our community showing support, don't forget to send us yours too! 💫 Community Coming Together💫 ... See MoreSee Less
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📢 It's Rare Disease Day!⭐ Community Coming Together⭐ 👉 300 million people living worldwide with a rare disease 👉 Over 6000 different rare diseases👉 72% of rare diseases are geneticWe're showing our support with our stripes and colours!!!!! 💥 Share your pictures with us to show your support!💥 ... See MoreSee Less
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📢 Join us tonight for the PTEN Power Hour! ⭐ Event - PTEN Power Hour: PTEN Q&A 📅 Date - 28 Feb 2024🕖 Time - 19:00💫Hey PTEN community don't forget tonight is the night for our PTEN Power Hour Q&A hosted by Dr Katherine Lachlan, who will be on hand to answer any questions you might have! 🎫 Get your tickets for the event here: buff.ly/3SUzb1Y 💥 Have any questions? Get them answered using this survey, and if you can't attend we can still help! - buff.ly/3ULH6zP ... 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.