News

Are you or a family member affected by PTEN hamartoma tumour syndrome (PHTS)?* Are you interested in taking part in a 60-minute phone call to share your experience and drive forward research? A patient unmet need survey is running to gather the day-to-day experiences of people living with PHTS, and how their condition is treated and managed.  The study is running in the Unit ...

We are excited to announce that as of 22nd June 2018, we will be changing our name to PTEN Research. Legally we will remain the PTEN Research Foundation, but if you’re applying for a grant, making a donation or organizing a fundraising event, please make sure you're referring to us as PTEN Research. Our website URL and social media channels will be unchanged.  Many thanks a ...

As we are sure you’ve heard by now, the new General Data Protection Regulation (GDPR) came into force on 25th May 2018. As a result, PTEN Research have published a new privacy policy, which is available here.   We have also updated our newsletter subscriber list, following the opt-in email that was circulated on 21st May. From now on, only people who consented to remaining on ...

Ohio State University: Cowden Syndrome Patient Symposium, 2018 Saturday 23rd June 2018, 9am-12pm    Join the team at Ohio State University for their annual educational conference focused on Cowden Syndrome and other PTEN mutation related disorders. This event is geared toward affected patients and their families but all are welcome to attend. The event will feature experts p ...

The PTEN Research Foundation is delighted to announce the launch of its newsletter. In September's issue, you can read our recent news, including details of a new clinical trial testing a potential treatment for PHTS.

June 2017 Overview The Boston Children's Hospital, Cleveland Clinic and Stanford University Medical Center, as part of the Developmental Synaptopathies Consortium (DSC), have launched their first clinical trial to investigate a potential treatment for individuals with PTEN Hamartoma Tumour Syndrome (PHTS). PHTS is a rare genetic syndrome that results from mutations in the PTE ...

On June 10th, Dr Maria Whitehead, Director of Research for the PTEN Research Foundation, presented at the “Cowden Syndrome and Other PTEN-Related Disorders: A Patient-Oriented Symposium” at The Ohio State University Wexner Medical Centre. Please follow the link to view all of the presentations from the day which include: Partnering with Your New or Current Primary Care Phy ...

Cowden Syndrome and Other PTEN-Related Disorders: A Patient-Oriented Symposium June 2017 Join us for our annual educational conference focused on Cowden syndrome and other PTEN mutation-related disorders. This event is geared towards affected patients and their families but all are welcome to attend. The event will feature experts in the fields of Genetics, Gastroenterology, ...