Useful links

PTEN Research is a charity that funds and facilitates research globally which will lead to new and better treatment for PHTS. We cannot provide personal or specific medical advice to individuals and families living with PHTS. However, there are a number PHTS groups and resources that may be helpful, and we have gathered links to these here.

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.

PHTS Patient Organisations

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.

UK:

PTEN UK and Ireland:  https://ptenuki.org/

Italy:

PTEN Italia: https://www.ptenitalia.org/

Germany:

CoBaLD: https://www.shg-cobald.de/

USA:

PTEN Foundation: https://ptenfoundation.org/

Patient Blog: https://beatingcowdens.com/

National Organisation for Rare Diseases (NORD): https://rarediseases.org/

Global:

PTEN World: https://www.ptenworld.com/

 

Detailed PHTS and related information for families living with PHTS

PTEN Hamartoma Tumor Syndrome, Cowden Syndrome, and Bannayan-Riley-Ruvalcaba Syndrome from the Cleveland Clinic, USA.

 

Information on genetic disorders and genetic testing

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

Clinical research information

Global clinical trials listings: https://clinicaltrials.gov/

Patient information about clinical research participation: https://www.ciscrp.org/