Global Sarcoma Diagnosis Pathway Survey

One of the year’s most important milestones was the first analysis of our Global Sarcoma Diagnosis Pathway Survey. With over 1,800 participants from 49 countries, the survey brought patient experiences into sharp focus and highlighted where delays occur — and where change is possible. Presenting these findings internationally was a powerful moment of collective pride.

SPAGN Annual Conference 2025

This year marked our first Annual Conference outside Europe, co-hosted with the U.S. National Cancer Institute. The room brought together familiar faces, and many new voices with approximately 35% first-time participants, including many groups from the US (40%) and Latin America reinforcing the value of gathering, listening, and learning from one another — especially in uncertain times. 

Sarcoma Awareness Month – July 2025

Our global campaign, “Signs & Symptoms: Know Your Normal,” was a true highlight of the year. Seeing patient groups worldwide unite around one clear message showed the power of aligned action in improving early diagnosis.

Consensus & Collaboration

The LMS Consensus Initiative and the Hereditary Predispositions in Sarcoma collaboration brought patients, advocates, clinicians, and researchers together to develop guidance for optimized care. Both initiatives will result in publications accessible worldwide, translating expertise into practical impact.

One of the highlights of 2025 was recognising the extraordinary impact of patient advocacy through the Advocacy in Action Awards and the Paola Gonzato Memory Award. These awards celebrate initiatives that turn patient voices into tangible change — from awareness and education to policy and clinical impact.

Throughout the year, our Voices of Sarcoma blog posted 15 pieces and continued to provide space for patients, caregivers, clinicians, and partners to share perspectives, experiences, and insights — strengthening connection and understanding across our community.

We were delighted to welcome 11 new member organisations into the SPAGN network this year. Their decision to join reflects a shared commitment to collaboration, patient-centred advocacy, and improving outcomes for people affected by sarcoma worldwide.

These new members come from the UK, USA, Sweden, Switzerland, Germany, and Uganda, representing a diverse range of sarcoma subtypes, advocacy models, and regional realities — from ultra-rare sarcomas and childhood cancers to research-focused and community-based initiatives.

 

Each organisation adds valuable experience, new perspectives, and renewed energy to our collective work.

Thank you to all our member organizations, partners, and advocates for your commitment, energy, and shared belief that together, we can transform the sarcoma landscape.

From all of us at SPAGN, to our global community of sarcoma patients and patient advocates, experts and pharma partners... wishing you a warm and joyful holiday season with a happy new year!