by Kathrin Schuster

As the year draws to a close, I want to take a moment to reflect on the incredible journey SPAGN has had throughout 2024. This year has been particularly meaningful as we celebrated our 15-year anniversary, and I couldn’t be prouder of everything we’ve accomplished together.

A milestone SPAGN Annual Conference

One of the highlights of this year was the SPAGN Annual Conference in Rome, which marked our 15th anniversary. This event was the largest we’ve ever held, with 130 participants from all corners of the globe. It was amazing to see our community come together, united by our shared passion for improving outcomes for sarcoma patients. I know that not everybody has the chance to participate onsite. So please have a look at our conference report and the recordings and get inspired, just as we did in Rome: Click here.

Advocating for specialized care: Sarcoma Intelligent Specialist Networks

This year, we made great strides in advancing our advocacy work for specialized care in sarcomas: We developed a paper on Sarcoma Intelligent Specialist Networks (SISN), which we presented to the Connective Tissue Oncology Society (CTOS), and which was earlier this year published in the Cancers, an international, peer reviewed open access journal on oncology. The paper emphasizes the importance of specialized care in improving patient outcomes, presenting core principles and highlighting key features from the patients' perspective. These key features can be adapted to meet the unique needs and challenges of various healthcare systems. I’m incredibly proud of the work that went into it. You can read more about SISN and access the publication here.

Sarcoma awareness and data gathering: The importance of early and correct diagnosis

It’s one of first things I heard when I became active in the sarcoma community in 2015: What if we could achieve that sarcoma diagnoses are made more quickly? Would this save lives? We believe it would. Thus, it was time to address this topic as this truly is a challenge for many if not all countries in the world. We know that delays and misdiagnoses are common, yet research on this topic remains scarce. This is why we made this a focus during our Sarcoma Awareness Month campaign. Through infographics, videos, and blog articles, we worked hard to raise awareness and bring attention to the challenges of accurate diagnosis. A key part of this effort was our Global Sarcoma Diagnosis Pathway Survey, aimed at understanding the diagnostic journey from the patient and caregiver perspectives. Preliminary findings were presented at CTOS 2024, and the full results will be published in 2025.

If you haven’t participated yet, there’s still time—please complete the survey by December 31, 2024. Learn more here.

Expanding advocacy in Latin America

With SPAGN’s increasing global reach comes greater responsibility. Many countries still lack sarcoma advocacy organizations or specialists. Although we know that changing the world won't happen overnight, we can make progress step by step. In 2024, we expanded our advocacy efforts with the launch of Sarcomunicándonos América Latina, an initiative focused on Latin America. This is an exciting step toward building a network of advocates who can provide support to sarcoma patients in their own countries. I am personally thrilled to watch its growth. Learn more about Sarcomunicándonos América Latina here.

Building partnerships and representing sarcoma patients globally

Throughout the year, SPAGN has worked hard to raise our voice in the global sarcoma community. One of the ways we’ve achieved this is through our continued collaboration with the Connective Tissue Oncology Society (CTOS). At CTOS 2024, we once again hosted the Patient Advocacy Lounge, offering a space for advocates to connect, exchange ideas, and learn from one another.

In addition, our presence at major medical congresses this year was strong, and we contributed significantly to discussions on sarcoma and rare cancers. From the Sarcoma & Rare Cancers Congress of the European Society of Medical Oncology (ESMO) to meetings of the American Society of Clinical Oncology (ASCO) or the European Musculo-Skeletal Oncology Society (EMSOS), SPAGN was there, ensuring that the patient perspective was heard loud and clear.

And a personal word…

The year has been filled with incredible projects, meaningful achievements, extensive travels, inspiring conversations. It allowed us to forge vital connections that have strengthened our global network.

These milestones make me proud, and while challenges still lie ahead, I am convinced that every conversation, email, and exchange helps us make the world a little better for people with sarcoma.

However, these successes are never as impactful when pursued alone. My personal highlight each year is the collaboration with our members, patient groups, and the countless volunteers who support both SPAGN and the national groups. This year stands out in this respect.

For example, working on the Global Sarcoma Diagnosis Pathway Survey brought together patient representatives from across the globe. I was deeply moved by the enthusiasm and dedication with which our colleagues and friends from different countries embraced this project. It was truly a global effort, and despite many years of involvement in the sarcoma community, this initiative has been especially significant for me. It demonstrates how far we’ve come as a united community, how much we support one another, and how much we can achieve together – because it’s only through collaboration that we succeed.

This is why I eagerly look forward to every next step, big or small, as we continue to embody SPAGN’s motto: “Working together, making a difference.”

Thank you!

A heartfelt thank you goes out to the SPAGN Board, the SPAGN team, our incredible volunteers, our inspiring member and patient groups worldwide, our sponsor partners for their valuable financial support, and, of course, the dedicated and committed expert community for their invaluable collaboration. I am looking forward to working with you in 2025 and beyond!

 

Photo credits: SPAGN, portrait for cover by Uli Deck