SPAGN Annual Conference 2026 Highlights ✨
Photos: Uli Deck
A Global Community United by Hope and Collaboration
The SPAGN Annual Conference 2026, held in Stockholm, Sweden at Karolinska University Hospital and Elite Hotel Carolina Tower, once again demonstrated the strength, warmth, and determination of the global sarcoma community. Bringing together patients, advocates, healthcare professionals, researchers, and industry partners from around the world, the conference created a powerful reminder that no one facing sarcoma stands alone. Across three inspiring days, participants shared knowledge, experiences, challenges, and hope — united by a shared commitment to improving the lives of everyone affected by sarcoma.
The atmosphere throughout the meeting reflected openness, mutual respect, and a genuine sense of belonging. In a rare disease community where many patients and families often feel isolated, the conference highlighted the importance of coming together, learning from one another, and building meaningful partnerships that extend far beyond the meeting itself.
Addressing the Full Sarcoma Journey
The program reflected the many facets of the sarcoma journey, spanning cutting-edge treatments and current research developments to broader discussions on quality of life, collaboration, and patient empowerment. Important sessions explored sarcoma in adolescents and young adults (AYA), the growing role of whole genome sequencing (WGS) and next-generation sequencing (NGS) in diagnosis and treatment, and the increasing importance of patient input through data sharing and biospecimens in driving research forward.
Throughout the conference, one message resonated strongly: meaningful progress is only possible when patients, clinicians, researchers, and industry work together as equal partners. Particularly inspiring were examples of international collaborations that demonstrated how collective efforts can accelerate research, improve care pathways, and amplify the patient voice globally.
Strong Participation and Interactive Exchange
The conference was characterized by highly interactive sessions and strong engagement from attendees. Thoughtful discussions, questions, and contributions from participants highlighted the depth of expertise and lived experience within the sarcoma community. The exchange between patient advocates, healthcare professionals, researchers, and industry partners created a dynamic environment focused on listening, learning, and advancing shared goals together.
SPAGN Board Elections
During the General Assembly, SPAGN members elected and confirmed several board positions:
Re-elected and confirmed as Co-Chairs: Denise Reinke and Markus Wartenberg
Re-elected and confirmed as Financial Director: Kai Pilgermann
Newly elected to the SPAGN Board: Brandi Felser
SPAGN also expressed sincere thanks to Sandeep Kumar for standing for election and contributing to the continued growth of the organisation.
Heartfelt thanks were extended to Christina Baumgarten, who stepped back from the board after many years of dedicated involvement and support for the sarcoma patient community.
Advocacy in Action & Paola Gonzato Memory Award 2026
The conference also celebrated exceptional advocacy initiatives through the Advocacy in Action Awards and the Paola Gonzato Memory Award, highlighting the creativity, commitment, and global collaboration of the sarcoma community.
Advocacy in Action Awards
1st Place – USA
Synovial Sarcoma Foundation
“Synovial Sarcoma Registry & Biorepository Initiative: Generating Real-World Evidence to Accelerate Targeted Research, Clinical Translation, and Supporting Monthly International Tumor Board”
2nd Place – Italy
Fondazione Paola Gonzato – Rete Sarcoma
“From Patients' Voices to Systemic Change: The Italian Sarcoma White Paper”
3rd Place – Bulgaria
Together Fighting Sarcoma
“Sarcoma Symptom Awareness Campaign: First National Sarcoma Awareness”
These initiatives showcased the creativity, dedication, and real-world impact of patient advocacy efforts across different regions, each contributing meaningfully to awareness, research, and system-level change.
Paola Gonzato Memory Award 2026
The 2026 Paola Gonzato Memory Award was presented to the Euro Ewing Consortium and the Bone Cancer Research Trust for their project:
“The Power of Patient Voice: Collaborations in Ewing Sarcoma.”
The award recognized an outstanding example of international collaboration and the powerful integration of the patient voice in research and care, demonstrating how shared purpose can drive meaningful progress in even the most complex sarcoma subtypes.
SPAGN Lifetime Achievement Awards
This year’s SPAGN Lifetime Achievement Awards honored individuals whose decades of dedication have profoundly shaped the sarcoma landscape.
Helga Meier-Schnorf (Fritz Eichenberger on her behalf), recognized for more than 25 years of pioneering advocacy and patient support in the GIST community.
Peter Reichardt, celebrated for his unwavering partnership with the patient community and commitment to patient-centered care.
Markus Wartenberg, honored for over two decades of leadership in building and strengthening patient communities nationally and globally.
Heikki Joensuu, whose groundbreaking work transformed the treatment landscape for GIST patients worldwide.
Their work has brought hope, inspired meaningful change, and strengthened the global sarcoma community for patients and families around the world.
Looking Ahead Together
As the conference concluded, participants left with renewed energy, strengthened connections, and a shared sense of purpose. Across sessions and informal exchanges, a consistent theme emerged: the importance of not feeling alone in the sarcoma journey, and the value of being part of a connected global community working toward common goals.
Beyond the scientific and advocacy discussions, the meeting created space for exchange that many described as inspiring and motivating. Sharing experiences, ideas, and perspectives across countries and disciplines helped build a sense of momentum and possibility for the work ahead.
The conference atmosphere reinforced that progress in sarcoma care and research is closely linked with collaboration and meaningful engagement across all stakeholders. The combination of scientific exchange, patient involvement, and open dialogue highlighted how shared effort can translate into real-world impact.
The SPAGN Annual Conference 2026 once again reflected the strength of the global sarcoma community — where collaboration, trust, and shared purpose continue to drive both progress and connection.