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 the adults an update on everything PTEN related from the past year. Thomas Pepper, CEO of The PTEN Research Foundation gave a summary of everything happening in the PTEN research world as well as Prof Marc Tischkowitz from Cambridge University updating us about the PTEN Registry. Attendees were also able to learn more about current research (and how they could take part) for example the PTEN-NET study being carried out by Dr Katherine Lachlan and the Genetic Counselling research by Eleanor Welsh.
As a charity we wanted to update our community about everything we have been getting up to since our patient day last summer. We shared with our community about our fundraising efforts and our successful National Lottery grant application which has enabled us to set up our mental health wellness program and PTEN counselling service with Rareminds. Zubyda Azzam, one of our dedicated PTEN counsellors, attended the day to introduce herself and speak about the importance of good mental health when living with a rare disease.
The sunshine brought the extra sparkle to such an amazing day filled with positivity, hope and connection. It was lovely to see so many of you there. If you were unable to attend this year’s event, then please do keep it in mind to attend next year. It is a fantastic opportunity to come face to face and meet other families and patients who are also on a PTEN journey. We can’t wait to see you all next year!
