The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing PHTS education, supporting patients, and by raising awareness. PHTS includes Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), PTEN-related Proteus syndrome (PS), and Proteus-like syndrome.

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The PTEN Hamartoma Tumor
Syndrome Foundation

We are excited to bring you a patient-powered registry where research is driven by patients and their real-world experience.

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**Click here to participate in The First PTEN Patient- Powered Registry and Natural History Study!** (Our registry is LIVE)

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What is PTEN Hamartoma Tumor Syndrome?

PTEN Hamartoma Tumor syndrome (PHTS) is a rare genetic condition that causes increased risk for certain cancers, benign growths, and neurodevelopmental conditions.

By Jessica Mester, MS, LGC – Certified Genetic Counselor, PTEN Research/Clinic Coordinator, Cleveland Clinic, Cleveland, OH

Learn more about PTHS Today!

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What to do if I learn I have PTEN?

Click below to learn more and download our helpful brochures you can take to physician visits.

Patient Testimonials

Knowing that the PTEN foundation continues to advocate and push for medical advancements gives me faith that my children and I have the support we need to keep going.

Jennifer Bradbury


The PTEN Foundation has been so helpful in giving me information and support to help me cope with my PTEN diagnosis. I feel like I’m not alone which is comforting to me.

Andrea Beilstein


We are so grateful for the PTEN Hamartoma Tumor Syndrome Foundation and the work Kristin Anthony has put in for our families.

Jennifer Hall


Being diagnosed with a rare disease is like swimming alone in the ocean with no land in sight. The PTEN Foundation was like finding land. We now know we are not alone. We are grateful beyond words.

Lori Ortega


If you are our patient and want to give us your feedback or if you just want to say "Hi", please follow us and get in touch via the following platforms:

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Get helpful information from researchers, and realize you are not alone.

Your Genetics and Health History Matter

Because it informs research and can provide insights into your risk for certain diseases and conditions. Join us for a...

2023 PTEN Symposium Scholarship Application


Join our PTEN Family Research Council

Do you want to make a difference in research? We need you! Sign up for our family research council today....

Meet Nikolas

Our son came to us at birth through foster care, and by 20 months he was ours forever through...

Meet Ross

My name Ross McRae I'm from Scotland just about to turn 21. I was diagnosed about 14 years ago maybe longer...

Meet David

Meet David I will try my best to explain my mothers and my own story with Cowden's Syndrome.  My story...

We are proud members of the following organizations

EURORDIS Rare Diseases Europe
Rare Foundation Alliance
Rare Cancer Coalition
Alabama Association of Nonprofits

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Donate to our PTEN research fund and support our effort to provide you a patient-powered registry, travel assistance to approved clinical trials, and additional funding for our trial grant endowment.

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