PHTS is granted an International Classification of Diseases (ICD) Code! - Click here for more information.
These links are being provided as a convenience and for informational purposes only; they do not constitute an endorsement or an approval by PTEN Research. PTEN Research bears no responsibility for the accuracy, legality or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content.
These groups have useful information about living with PHTS, where to get help and support, and provide networking between families. Some also have links to social media pages and social media groups.
PTEN UK and Ireland: https://ptenuki.org/
PTEN Italia: https://www.ptenitalia.org/
PTEN Foundation: https://ptenfoundation.org/
Patient Blog: https://beatingcowdens.com/
National Organisation for Rare Diseases (NORD): https://rarediseases.org/
PTEN World: https://www.ptenworld.com/
‘PTEN Hamartoma Tumor Syndrome, Cowden Syndrome, and Bannayan-Riley-Ruvalcaba Syndrome’ from the Cleveland Clinic, USA.
Genetic Alliance UK: https://www.geneticalliance.org.uk/information/services-and-testing/what-is-a-genetic-test/
MedlinePlus Healthcare information: https://ghr.nlm.nih.gov/primer/testing/genetictesting
Global clinical trials listings: https://clinicaltrials.gov/
Patient information about clinical research participation: https://www.ciscrp.org/