Participating at an international congress on limb-saving surgery was overwhelming yet eye-opening for Stéphanie Anzellotti. She is a patient advocate at Cum Cura in Belgium and mother of a child who suffers from osteosarcoma. Stéphanie shares what she is taking home as her key learnings from this experts’ meeting.

Exciting progress is made in the field of clinical trials, finds Roger Wilson. He has participated in several exercises of clinical trial design as a patient advocate. Roger explains the what's what of the latest developments.

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.

Concrete improvements in sarcoma care in Italy are becoming a reality. The country’s first Sarcoma White Paper maps out 14 recommendations based on patients’ priorities, and its implementation has already begun. The Fondazione Paola Gonzato-Rete Sarcoma ETS, founded by Ornella Gonzato, was honored for this landmark initiative last May by SPAGN with an Advocacy in Action Award. Martina Gherlinzoni, a member of the Foundation’s Board of Directors, explains what makes their project so distinctive that it has become a major national news story in Italy.

At the age of 22, John Müller was diagnosed with an Ewing sarcoma, followed by ten months of multimodal therapy. Three years later, he plans to set off by bicycle from Germany to India. His goal: to raise awareness of Ewing sarcomas and to mobilize donations for an emergency fund for sarcoma patients, particularly adolescents and young adults (AYA). Shortly before the start of his journey, John spoke with Voices of Sarcoma.