Wednesday, September 26, 2018

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 over 70 patients, caregivers and researchers at our first International Patient Symposium.IMG_8250.jpg
    • We offered over $6000 for travel scholarships.
    • For the 2nd year, we were recognized by Agilience as a top 500 rare disease authority.
    • We are a proud member of NORDS Rare Cancer Coalition, the first of its kind in the US.
    • We published a patient-friendly brochure and leaflet and 2 informational newsletters.
    • We are currently planning our second PTEN patient and scientific symposium to be held at the Cleveland Clinic April 7-8, 2019. (more information to come)
    • We are working to bring you a patient-powered registry where research is driven by you, and we will share de-identified data with you in the form of reports.

 

Research Trials

PTEN Foundation Helping Doctors

We assist researchers 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.  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

We recommend taking the following information in to your physician appointments as an educational resource.