PTEN Foundation Helping Patients
Our Mission is to support initiatives focused on finding treatments or therapies for PTEN Syndromes. We are your advocates working to raise awareness and accelerate research. We have achieved many goals to that end.
- In March 2018 we hosted our first annual symposium greeting over 70 patients, caregivers, and researchers at our International Patient Symposium.
- Our foundation has offered more than $10,000 for patient support and travel scholarships.
- For the 3rd year, we were recognized by Agilience as a top 500 rare disease authority.
- We are a proud member of NORD’s Rare Cancer Coalition, the first of its kind in the US.
- Our team recently updated our patient-friendly brochure and leaflet and in collaboration with our ESAB. (Link to the Brochure and Leaflet)
- We are currently planning our 5th annual PTEN patient and scientific symposium on June 16, 2021. The event will be held at Children’s Hospital PhiladelphiaÂ (Link to Registration)
- Join our patient registry via the link below.
PTEN Foundation Helping Doctors
We assist researchers in showing vigor with their research by disseminating their published research to our patient community and providing them the opportunity to educate the patient community with their latest research.
How can I advocate for myself?
We suggest you familiarize yourself with the current NCCN screening guidelines for PTEN Hamartoma Tumor Syndrome. Â We have provided a brochure and leaflet for you to carry to your physician visits. If you are newly diagnosed, we will connect you with certified genetic counselors familiar with PHTS