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
We are excited to bring you a patient-powered registry where research is driven by patients and their real-world experience.
Click here to learn more.
**Click here to participate in The First PTEN Patient- Powered Registry and Natural History Study!** (Our registry is LIVE)
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
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.
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.
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.
We are so grateful for the PTEN Hamartoma Tumor Syndrome Foundation and the work Kristin Anthony has put in for our families.
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.
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PTEN Hamartoma Tumor Syndrome Awareness Day is Oct 23
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.