Registration is now open for the next PTENUKI Patient Day. All welcome, register now!! Saturday 16th November 2019 from 10am to 5pm at Heron Tower, 29th Floor, 110 Bishopsgate, London, EC2N 4AY The event will be a great chance for meeting and talking with other people affected by PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome (PHTS), Cowden’s […]
Author Archives: Ian Stock
27
Feb
Feb
PTENUKI: making connections First established in 2016, PTENUKI is making great strides to help patients and carers affected by PTEN. Now with a network of over 200 members, a significant proportion of the estimated 300 PTEN patients in the UK, PTENUKI is proud to announce its new Buddy Scheme. The Buddy Scheme will match up […]
14
Jan
Jan
At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful PTEN story… Hello everyone, it’s a pleasure to be here today and to share our patient story within you all. My name is Yvonne and if you can’t tell already from the strange accent, I’ve travelled down from Glasgow in […]
18
Dec
Dec
The fourth national PTEN / PHTS patient day held on 24th November 2018 was attended by over 80 people. Once again Salesforce kindly provided the venue and staff to host the day at Heron Tower in London, providing a fantastic opportunity for people to make new friends, learn more about PHTS, and take part in a […]
07
Aug
Aug
On behalf of the charity I am delighted to attach to our Summer Newsletter with details of all our updates as well as a link to sign up to our next patient day! – Ellie We’re hoping to be able to do a newsletter every 6 months which will contain a whole range of useful […]
02
Aug
Aug
Michelle and Lexy share their story and hopes for the future…
13
Jul
Jul
David told us his story as a PTEN/PHTS patient from childhood, through diagnosis, to now…
08
Feb
Feb
The third national PTEN / PHTS patient day held on 11th November 2017 was attended by over 80 people. Once again Salesforce kindly provided the venue and staff to host the day at Heron Tower in London, providing a fantastic opportunity for people to make new friends, learn more about PHTS, and take part in […]
09
Aug
Aug
We’re delighted to have launched our new website for patients and families affected by PTEN / PHTS. It’s a fairly minimal launch to start with which is intentional, we would rather get smaller amounts of information published more quickly than hold anything back. We have included some introductory information on what the patient group is aiming to […]