About PTEN UK and Ireland Patient Group
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.
For Rare Disease Day,
– We are getting all of our trustees to submit their story to https://www.rarediseaseday.
– We are working with Rare Revolution magazine to have a social media ‘take over’. We will broadcast throughout the day which will highlight to their audience what PTEN is.
– We are attending the annual Rare Disease Parliamentary reception on the 28th February to speak to politicians about the vital importance of coordination of care for PTEN patients
– We are also hoping to work with Medics 4 Rare to do a social media take over with them to raise awareness of PTEN within the trainee medics community.