Letter from our President
I was diagnosed with a PTEN mutation in 2011 after surviving thyroid cancer. Â Like many of you, a lucky diagnostic journey led to my diagnosis. While there were a few existing Facebook support communities, I realized there was no formal organization to support our patient community. Thus, my decision to form the PTEN Hamartoma Tumor Syndrome Foundation. Â We aim to support you and researchers working to find a treatment for PTEN Syndromes. We do this by ensuring our community knows the available research, raising PHTS awareness, and developing programming to provide long-term patient benefits.
We believe the number one need for our community is to gain a proper diagnosis that puts every patient on the path to treatment. Our priority is that your voice is heard through advocacy, your needs are met, and you have access to the best care.
We have had great success in a short time, including the following:
- We offered more than $15,000 for patient scholarships to our community to help cover medical and travel expenses.
- We published the first-of-its-kind patient-friendly brochure and screening guideline leaflet for our patients to take into physician visits.
- We hosted the first-ever International PTEN Patient Symposium with more than 70 patients and researchers present.
- We published the PTEN Center of Excellence Criteria with input from our Scientific Advisory Board.
- In collaboration with PTEN Italia, we recently launched the first-of-its-kind international patient advisory council to connect patients who will work together to advance beneficial programming.
- We launched the only International PTEN patient-powered registry.
- In collaboration with PTEN Italia, we will participate in Europe’s first International Symposium.
- We developed and submitted our protocol for the first patient-owned pten biorepository.
It is an honor to serve you. Â Please feel free to reach out by email anytime. The PTEN Hamartoma Tumor Syndrome Foundation is your foundation, and we want to hear from you.
