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

The bitter experience of not finding the information they needed when their son was diagnosed with osteosarcoma, made Lidiya Vitanova and her husband give a promise: No family in Bulgaria should navigate sarcoma alone. They founded Together Fighting Sarcoma and pulled off a national campaign which won the third place of SPAGN’s Advocacy in Action Awards.

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.