Advocacy in Action Award
Each year, the Sarcoma Patient Advocacy Global Network (SPAGN) honors member groups who are driving innovation in patient advocacy through our Advocacy in Action Award.
In addition, in 2025, Ornella Gonzato from the Fondazione Paola Gonzato Rete Sarcoma ETS, Italy launched a special bone sarcoma award: the Paola Gonzato Memory Award, which was given once again this year.
Why These Awards Matter
Patient advocacy ensures that the patient voice is heard. It empowers people to take action, influence change, and address unmet medical needs.
The Advocacy in Action Award and the Paola Gonzato Memory Award both shine a spotlight on the tremendous impact of advocacy in sarcoma care – whether for patients, caregivers, healthcare professionals, or the wider sarcoma community.
Both awards celebrate outstanding practices, projects, initiatives, or campaigns, as well as the dedicated advocates working behind them.
Advocacy in Action Award 2026 Winners
1st Place - 2000 €
Synovial Sarcoma, USA - Registry & Biorepository Initiative: Generating Real-World Evidence to Accelerate Targeted Research, Clinical Translation, and Supporting Monthly International Tumor Board
This project established the first dedicated, IRB-approved global registry and biorepository for synovial sarcoma in partnership with Children’s Hospital of Philadelphia (CHOP) and Penn Medicine. Since 2023, it has collected longitudinal clinical data, patient-reported outcomes, and serial biospecimens to generate real-world evidence for this rare and aggressive disease.
The registry directly powers a monthly International Synovial Sarcoma Tumor Board, where multidisciplinary experts review 20–30 global cases per session, providing second opinions, informing treatment decisions, and accelerating research translation. By early 2026, 125 patients were enrolled, with paired biospecimens enabling studies on resistance mechanisms and targeted therapies.
Funded entirely through philanthropy (~$1M), the initiative reduces data silos, supports patients and clinicians worldwide, and creates a scalable, non-pharma-dependent model that advances care and research for synovial sarcoma and potentially other sarcoma subtypes.
2nd Place - 1500 €
Fondazione Paola Gonzato-Rete Sarcoma, Italy - From Patients' Voices to Systemic Change; The Italian Sarcoma White Paper
This project produced Italy’s first-ever Sarcoma White Paper, based on the nationwide survey “Living with Sarcoma in Italy”, which captured the lived experiences of patients and caregivers across diagnosis, treatment, and daily life challenges.
Launched in 2023 with a national awareness campaign and conference, the initiative transformed patient-reported data into a structured policy document combining lived experience, clinical evidence, and health system analysis. It identifies key gaps in sarcoma care and provides concrete, system-level recommendations to improve equity, quality, and coordination of care in Italy.
The White Paper was presented at the Italian Parliament under ministerial patronage and received national media coverage reaching over 46 million readers, elevating sarcoma care to a national policy priority.
Funded through a lean, philanthropy-supported model, the project demonstrates how patient voice can be translated into actionable policy and a scalable framework for rare cancer care reform.
3rd Place - 1000 €
Together fighting Sarcoma, Bulgaria - 'Sarcoma Symptom Awareness Campaign: First National Sarcoma Awareness
This project is an advocacy-driven initiative designed to strengthen sarcoma awareness, patient empowerment, and system-level engagement across key stakeholder groups, including patients (pediatric and adult), caregivers, healthcare professionals, and policymakers.
The project focuses on patient information and education, advocacy and lobbying, and the use of modern communication tools to improve visibility, understanding, and engagement around sarcoma. It aims to bridge gaps between patients, clinicians, and decision-makers by translating lived experience into actionable advocacy outputs.
Implemented through a structured, multi-channel approach (including digital tools and communication materials), the initiative is designed to amplify patient voices, improve access to reliable information, and support stronger representation of sarcoma within healthcare and policy discussions.
Key objectives include increasing awareness, strengthening patient support, enhancing quality of life, and contributing to research-informed advocacy. The project is tailored to be adaptable across national and international contexts, with potential for replication in other rare disease settings.
Overall, it demonstrates how coordinated advocacy efforts can convert patient experience into meaningful system-level influence and long-term visibility for the sarcoma community.
The "Paola Gonzato Memory Award" 2026 Winner
In memory of Paola Gonzato and supported by the Fondazione Paola Gonzato Rete Sarcoma ETS (Italy), we are proud to announce this year’s winning project and to recognize the remarkable advocacy behind it.
Winner: The Euro Ewing Consortium and Bone Cancer Research Trust, UK - The Power of Patient Voice: Collaborations in Ewing sarcoma
This impactful campaign centered on public awareness and community engagement through storytelling. By empowering patients to share their experiences, the Bone Cancer Awareness Week 2024 campaign created a sense of solidarity and visibility for the bone sarcoma community. The launch of a dedicated awareness ribbon helped unify efforts and enhance public recognition. The campaign reached new audiences, attracted new support service users, and encouraged 216 individuals to complete an awareness survey, directly influencing future advocacy and care improvements.
With one patient’s story shortlisted for a Smiley Charity Film Award, the campaign’s reach continues to grow—raising critical awareness of bone cancer across the UK.
🏅 AIAA Winners Through the Years
The Advocacy in Action Award has highlighted the creativity, dedication, and impact of sarcoma advocates worldwide. Explore past winners and their inspiring projects: