Written by Kathrin Schuster, SPAGN
What began as a European network of sarcoma patient advocates has grown into a global movement. In honor of Sarcoma Awareness Month, we are honored to spotlight our foundation partner SPAGN. Kathrin Schuster, Executive Director of the Sarcoma Patient Advocacy Global Network (SPAGN), shares the organization’s evolution, impact, and vision for the future. From uniting voices across five continents to shaping patient-centered research and awareness campaigns, SPAGN is proving that global collaboration can drive meaningful change for the sarcoma community.
SPAGN began as SPAEN in 2009 and expanded globally in 2016. What motivated this transition, and how has the organization's mission evolved since then?
SPAEN was originally founded in 2009 as a European network of 11 national patient advocacy groups focused on sarcomas, GIST, and desmoid tumors. The aim was to join forces across borders wherever it was beneficial to improve conditions for sarcoma patients. The idea resonated quickly, and more organizations joined over time, including from outside Europe, such as Israel and India. While they were warmly welcomed, our statutes only allowed them to join as “Associate Members.”
In 2016, SPAEN’s membership collectively decided to amend the statutes to allow full membership for non-European organizations. The reason was clear: many challenges faced by sarcoma patients are shared across borders, such as the need for specialized care, access to information, and support for self-advocacy. Although we retained the name “Sarcoma Patients EuroNet” until 2022, our work had long since become global. The name change to Sarcoma Patient Advocacy Global Network (SPAGN) was a necessary step to reflect and unify the voices of sarcoma patient advocates worldwide.
With over 65 member groups across five continents, how does SPAGN foster a unified voice among diverse cultures and healthcare systems?
Fostering a unified voice across different cultures and healthcare systems is an ongoing challenge, and one that becomes more complex as we grow. Still, there are powerful unifying factors: sarcoma patients everywhere often feel isolated due to the rarity of the disease, face delays in diagnosis, and are commonly treated by non-specialists, which affects their outcomes. There is also a widespread need for better education, not only for patients but also for healthcare professionals.
Of course, some challenges are more specific to a country’s healthcare system or cultural context, ranging from treatment access to cancer stigmatization. That’s why we try to work across borders where it makes sense, support local efforts where needed, and most importantly, listen, learn, and work together to shape joint solutions.
A good example is our project and publication on Sarcoma Intelligent Specialist Networks, which aimed to define what makes a center truly “sarcoma-specialized” from the patient’s perspective. During the process, it became clear that healthcare systems differ widely in infrastructure, resources, and organization. We worked closely with our partners to adapt our core requirements into a flexible model that could be implemented in diverse settings, without compromising on quality care principles. Our manuscript was published in Cancers in 2024 and is freely accessible to interested readers worldwide.
How does SPAGN support its member organizations in developing effective patient support programs and advocacy initiatives?
We support our member organizations through two key pillars: by sharing knowledge and by connecting people.
Our biggest event each year is the SPAGN Annual Conference. It’s where we bring together patient advocates from around the world and provide useful updates, from the latest in research and medical care to practical tools that help them in their daily work, to skills such as storytelling, advocacy, peer-to-peer support, and many more.
Outside the conference, we offer webinars on topics our members care about, like clinical trials that are open for enrollment or tools that help with digital communication.
The second major focus is networking. We believe in the strength of collaboration, and we actively connect patient advocates working on similar issues across the globe. This leads to the formation of focused working groups and joint projects. For instance, the Bone Sarcoma Alliance unites advocates with an interest in bone sarcomas, while our coordination of Sarcoma Awareness Month allows member organizations to amplify a unified message. This message can be shared globally yet adapted locally, maximizing impact through worldwide collaboration.
How does SPAGN collaborate with research networks and professional organizations like CTOS to advance sarcoma research globally?
We strongly believe that progress in sarcoma research can only come through collaboration with sarcoma experts, researchers, policymakers, and industry. Over the years, we’ve joined forces with experts in many ways, whether it’s being part of groups like the EORTC Soft Tissue and Bone Sarcoma Group in Europe or helping shape publicly funded research projects by bringing in the patient perspective. We’ve also launched our own initiatives, like the consensus roundtable meetings, where experts and advocates come together to tackle a specific topic or subtype and develop recommendations. These outcomes are published and used to guide physicians in delivering high-quality care, especially in ultra-rare cases.
In 2022, SPAGN formalized its collaboration with the Connective Tissue Oncology Society (CTOS), and we’ve been working closely together ever since. For instance, as part of the CTOS Outreach Committee. Our goal has been to extend CTOS’s global reach and help build sarcoma expertise in currently underserved areas.
A key priority for us is ensuring that research is patient-centered and inclusive. This includes ensuring patients can access, understand, and participate in research. However, significant challenges remain: global disparities in trial access, limited data infrastructure, underfunded research, and the exclusion of entire regions from innovation. We know these are complex issues that won’t be solved overnight, but by working together, we can continue making steady progress.
Given the rarity of sarcomas, what approaches does SPAGN take to raise awareness among the public and policymakers, and how can organizations like MIB Agents contribute to these efforts?
Sarcoma awareness isn’t something we can address from just one angle. A significant aspect of our work is engaging with a diverse range of stakeholders, including medical professionals, researchers, policymakers, and industry leaders, to ensure a comprehensive understanding of the challenges patients face and to encourage collaboration.
For the general public and primary healthcare providers, our primary awareness effort is the annual Sarcoma Awareness Month in July. The 2025 campaign, called “Know. Act. Advocate.”, builds on the first global campaign we did in 2024. The goal is to help people recognize signs and symptoms earlier, empower patients to speak up, support frontline healthcare workers, and strengthen the global community around sarcoma. We provide ready-to-use materials and messaging that national groups can tailor to their local needs.
Groups like MIB Agents play a crucial role. You can support by sharing campaign materials, tailoring messages to local contexts, engaging healthcare professionals, and encouraging patients to share their stories. It’s all about amplifying the message together, and ultimately, helping patients get diagnosed earlier and get better care. In addition, we would also greatly appreciate your insights and suggestions for future projects and campaigns. That’s what our motto, “Working together, making a difference,” really means.
Looking ahead, what are SPAGN's strategic goals for the next five years, and how do they plan to measure success in achieving them?
Back in 2021, we took time to reflect and plan out SPAGN’s strategy through 2026. One big goal was to become a stronger, more connected, and more impactful organization—one that brings together active members from around the world. In addition, we focused on areas like tackling unmet needs, improving access to specialized care, making sure patients have a voice in research, and raising global awareness of sarcoma. All of the projects we’ve worked on in the last few years fit into one or more of those goals.
Becoming a global organization in 2022 was a big step toward that vision. Now, we are preparing for our next strategic planning phase beyond 2026. This next phase will take into account global developments, our evolving role, and emerging opportunities that can help us meet ongoing and future challenges even more effectively.
