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

We would like to find out how many PTEN children are born between 2007 - 2015 in the UK. Our medical Trustee Dr Lachlan would like the information to help her with a PTEN thyroid study. If you have a PTEN child with a birth year in this bracket please comment below! This is only to gauge numbers and will not require you to take part in any form of research. Thank you. ... See MoreSee Less
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PLAY OUR LOTTO TODAY & WIN BIG!The next draw is TOMORROW!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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One week left until our next PTEN Power Hour! Sign up today and to hear from a leading PTEN researcher - Dr Priyanka Tibarewal! Learn about all things PTEN - you won't want to miss it!buff.ly/3KzxemK ... See MoreSee Less
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Join the fun with our charity run!! There are lots of activities you can take part in this month for our charity! For more info:buff.ly/3tV99Bt We hope you feel inspired to take part in an event and contribute towards improving the lives of many! #pten ... See MoreSee Less
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WE NEED YOU! I am looking at creating an EHCP advice document for PTEN children within a school setting. It would contain information about how to set up an EHCP, what information is vital to include and specifically any PTEN related issues. To make sure it has all perspectives covered I would like to set up an informal PTEN EHCP advisory group. If you are a parent that has been through the EHCP process or you are wanting some advice of how to get one then we would love you to join the meeting. Please comment below if you would like to be involved or email me on kelly@ptenuki.org to find out more information. Thank you. ... 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.