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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

11 hours ago

PTEN UK & Ireland Patient Group
Less than a week to go! JOIN US Wednesday 22nd May for the PTEN Power Hour: Q&A with our professionals on Surveillance and the PTEN Patient Registry event!We will be joined by Professor Marc Tischkowitz PhD FRCP, Head of the Department of Medical Genetics, University of Cambridge, UK, Dr Angela F. Brady FRCP PhD, Consultant Clinical Geneticist and Honorary Senior Lecturer, Imperial College London, UK, and Katerina Stroud, Research nurse, Cambridge University Hospitals, UK.This online event is your chance to get valuable information and connect with others in the PTEN community. Don't miss out on this opportunity to expand your knowledge and engage with professionals in the field. Register now via Eventbrite to secure your spot! buff.ly/3wr70zk Also send your questions for the experts to us in advance through this link: buff.ly/4bwDln2We look forward to seeing you!! ... See MoreSee Less

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PTEN UK & Ireland Patient Group

21 hours ago

PTEN UK & Ireland Patient Group
EXCITING NEWS: WE HAVE LAUNCHED A LOTTERY! PLAY TODAY & WIN BIG!One Lottery is an exciting weekly lottery that raises money for small groups, clubs and charities. Play the lottery and support our good cause - it’s that simple!Each ticket will consist of 6 numbers and each number will be between 0 and 9. There will be a draw every Saturday night when a 6 digit winning combination will be picked. Match all 6 and you win the top prize of £25,000!Each ticket costs £1 per week. You can buy more than one ticket for each draw. At least 50p from every £1 ticket you buy will come back to PTENUKI! More information can be found on our about us page. The remainder is spent on prizes and the administration of the lottery. BUY TICKETS NOW - buff.ly/4be14Zn ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 days ago

PTEN UK & Ireland Patient Group
EXCITING NEWS: WE HAVE LAUNCHED A LOTTERY! PLAY TODAY & WIN BIG!One Lottery is an exciting weekly lottery that raises money for small groups, clubs and charities. Play the lottery and support our good cause - it’s that simple!Each ticket will consist of 6 numbers and each number will be between 0 and 9. There will be a draw every Saturday night when a 6 digit winning combination will be picked. Match all 6 and you win the top prize of £25,000!Each ticket costs £1 per week. You can buy more than one ticket for each draw. At least 50p from every £1 ticket you buy will come back to PTENUKI! More information can be found on our about us page. The remainder is spent on prizes and the administration of the lottery. BUY TICKETS NOW - buff.ly/4be14Zn ... See MoreSee Less

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PTEN UK & Ireland Patient Group

3 days ago

PTEN UK & Ireland Patient Group
PLAY OUR LOTTERY TODAY, WIN BIG AND SUPPORT OUR CAUSE!One Lottery is an exciting weekly lottery that raises money for small groups, clubs and charities. Play the lottery and support our good cause - it’s that simple!Each ticket will consist of 6 numbers and each number will be between 0 and 9. There will be a draw every Saturday night when a 6 digit winning combination will be picked. Match all 6 and you win the top prize of £25,000!Each ticket costs £1 per week. You can buy more than one ticket for each draw. At least 50p from every £1 ticket you buy will be spent on supporting the good causes of the lottery. More information can be found on our about us page. The remainder is spent on prizes and the administration of the lottery. BUY TICKETS NOW - buff.ly/4be14Zn ... See MoreSee Less

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PTEN UK & Ireland Patient Group

1 week ago

PTEN UK & Ireland Patient Group
Have you heard of Being Positioned: a nonprofit that provides “Make-A-Wish” type trips for adults with rare genetic disorders! ✈️ After the founder was diagnosed with Neurofibromatosis Type 2 (NF2) 8 years ago, she quit her job to travel the world for a year! Traveling transformed her ability to cope with her condition and so she wanted to create a way to help others have a similar experience. Each trip is 5 to 7 days long. And it’s for the recipient and one other person (i.e. spouse, friend, relative). They let you pick your destination and influence every aspect of your journey (trip), but they handle the rest. All travel expenses are booked and paid for. Previously they only offered journeys to a couple of disorders. But as the program has grown, they no longer limit the trips to specific conditions! 🤗I wanted to share our flyer here incase anyone is interested in applying for a trip. You can also visit www.beingpositioned.org to learn more about the organization! Thanks for helping us spread the word! ❤️ ... 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.