Posts Tagged ‘synovialsarcoma; synovialsarcomafoundation; bio registry; Children’sHospitalofPhiladelphia; PennsMedicine’

This year’s winner of the first prize of SPAGN’s Advocacy in Action Awards is the Synovial Sarcoma Foundation based in the US. With a mission to advance research into this rare and aggressive cancer, they established a biorepository and registry to gather patient data. Synovial sarcoma patients worldwide can participate in this game-changing program. Julie Kramer, a synovial sarcoma survivor herself, gives us the background.