Category Archives: News

PTEN UK & Ireland Patient Day summary 2023

On Saturday 24th June 2023 we held our 6th PTEN Patient Day in Oxfordshire, kindly hosted by the HealthScience communications consultancy Oxford PharmaGenesis. It was a beautiful sunny day so we were able to enjoy children’s entertainment and a BBQ in the beautiful walled garden. Whilst the children enjoyed the entertainment by Captain Fantastic we were able to give […]

One month to go until the next PTEN UK and Ireland Patient Day!

We are very excited that our 2023 PTEN Patient and family Day is just around the corner. Everyone is welcome! Date: 24th June 2023 Time: 10:30am – 3:30pm Venue: Tubney Warren Barn, Oxford, PharmaGenesis, Tubney, OX13 5QJ The day promises to be full of fun with children’s entertainment from Captain Fantastic! . We also have a delicious summer BBQ from All Events.  […]

PTEN Wellbeing Clinics

EXCITING NEWS!!! In the PTEN community we all understand the impact that living with a PTEN mutation can sometimes have, both physically and mentally. Therefore, PTENUKI are pleased to launch the *PTENUKI Wellbeing clinics* in collaboration with Rareminds. These wellbeing clinics will be monthly, online sessions available to all patients, parents, carers and family members […]

PTENUKI – new Chair of trustees

We are delighted to announce our new Chair of trustees, Jack Donnelly. Jack is from Coventry and approached the charity at the beginning of 2023 after his daughter Amara was diagnosed with the PTEN gene mutation at the age of 2. Jack felt strongly that after learning of Amara’s diagnosis it became apparent that there was a lack of […]

Patient Group PTENUKI reflects on achievements on its third rare disease day

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 […]

Website Launch – Nov 2017

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 […]