Letter from our President
I was diagnosed with a PTEN mutation in 2011 after surviving thyroid cancer. Like many of you, it was a lucky diagnostic journey that 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. Our mission is to support you and researchers who are working to find a treatment for PTEN Syndromes. We do this by ensuring our community is aware of the available research, raising PHTS awareness, and developing programming to provide long-term benefits to our patients.
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 very best care.
We have had great success in a short period of time, including the following:
- We offered more than $6000 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 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 hosted our third patient symposium, August 2020.
- We developed and submitted our protocol for a\gthe first patient-owned pten biorepository.
It is an honor to serve you. 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.