The patient group’s purpose is to improve the lives of patients, parents and carers of all ages, in the United Kingdom and Ireland, who are affected by PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome (PHTS), Cowden Syndrome (CS), or Bannayan-Riley-Ruvalcaba Syndrome (BRRS) through better patient support, increased awareness, more accurate and accessible information, earlier diagnosis and intervention, greater research into treatment and prevention, and improved coordination of care.

We will be hosting events to support our mission, including online patient support sessions, in person annual patient meet ups and the monthly PTEN Power Hour which is an online meeting for the PTEN patient community to speak directly to the medical and research professionals that support our rare condition.