A view from Brazil: Being part of international networks helps improve sarcoma care

by Fernando Campos

Sarcomas are rare diseases. And, like all rare conditions in medicine, they carry a heavy burden of uncertainty, not only for patients and their families, but also for healthcare professionals. Working at the largest cancer center in Brazil, I witness every day how this uncertainty impacts the care of sarcoma patients and often turns into something even harder to face: the feeling of being alone.

I have cared for young patients who waited many months, and sometimes years, for an accurate diagnosis. I’ve seen families travel hundreds of kilometers in search of specialized care. And I work, within the same country, alongside incredibly dedicated colleagues who do the best they can with the limited resources available to them.

Amid so many challenges, the past few years have shown me that in this journey to improve care for a rare and often neglected disease, one element has proven essential and capable of changing everything: connection. Patients connecting with each other. Healthcare professionals connecting with each other. This has transformed the natural history of sarcomas around the world, including in my country Brazil  and my region, Latin America.

A Brazilian perspective: gaps and strengths

Brazil is a continental country, with over 200 million inhabitants, and deep regional and socioeconomic inequalities. We have a universal public health system called SUS (“Sistema Único de Saúde”), on which around 75% of the population relies exclusively. But access to early diagnosis and specialized cancer treatment still poses major challenges not only in Brazil, but across the region. This situation is even more complex for rare cancers such as sarcomas.

Brazil does not have a national sarcoma registry, which means we lack reliable data on incidence rates, clinical outcomes, and how care is distributed across the country. Oncology care is highly unequal, and people living far from major urban centers face extreme difficulties, ranging from unacceptable delays in diagnosis to long journeys just to receive chemo or radiotherapy.

A recent study from our group at the A.C. Camargo Cancer Center showed that a sarcoma patient’s type of healthcare coverage (public or private) often predicts the stage of the disease at the time of diagnosis. In other words, where you live in the country and how you access care may define your chances of cure.

But that’s not the whole story. Brazil also has excellent academic centers, a growing number of sarcoma specialists, and most importantly, deeply engaged patients and families who organize, advocate, share knowledge, and provide support. Groups like the Brazilian Desmoid Tumor Association (now expanded into Sarcomas and Desmoid Tumor Brazil) and Oncoguia Institute have played a crucial role in transforming this landscape. These local forces are powerful. But we know that acting alone is not enough.

Why global cooperation matters

In March 2025, during the SPAGN Annual Conference in Washington, I had the opportunity to speak about the reality of sarcoma care in Brazil and Latin America. The exchange of experiences there strengthened my conviction: when we come together, across borders, languages, and healthcare systems, we expand what is possible.

 Being part of international networks has transformed how I see and practice oncology. Participating in global consensus initiatives such as the management guidelines for leiomyosarcoma and the recent update on chordoma guidelines has taught me that global cooperation doesn’t mean importing ready-made solutions. It means building dialogue.

When Latin America joins the conversation, we don’t just bring challenges. We bring knowledge. We understand what it means to deliver quality care in resource-constrained settings. We are learning how to adapt clinical protocols, conduct research despite structural barriers, and empower patients within fragmented health systems.

In 2019, a collaborative effort led by sarcoma experts from the European Union marked what I consider a turning point for sarcoma care in Latin America. The Sarcoma European & Latin America Network (SELNET) is a collaborative network between leading oncology institutions from Latin America, Europe, and more recently, North America SELNET was created as a research project funded by the European Horizon 2020 program to improve sarcoma care in the region through collaboration by promoting diagnostic review, basic research, the creation of a clinical registry platform, and the development of treatment guidelines. In many ways, SELNET empowered sarcoma specialists across Latin America, who were then able to disseminate updated treatment discussions and guidelines.

Personally, I’ve had the privilege of co-leading studies and guidelines that now include a Latin American perspective. And this has been transformative, both for patients and professionals in our region. What’s most rewarding is knowing that, working at the cancer center that trains the largest number of oncology specialists in Brazil, I can plant the seeds of this knowledge and these possibilities in each new oncologist, who will take it to different corners of our vast country.

Representation is not just symbolic, it’s strategic

During the SPAGN conference, I was struck by the genuine interest people had in hearing about what we’re facing in Brazil. Our story resonated, because it reflects the experiences of many other countries with fragile or unequal healthcare systems. But it also showed that solutions will not come only from the Global North. They can emerge more quickly, and more effectively, through collaboration.

Giving visibility to professionals and patients from low- and middle-income countries is not just a symbolic act. It’s a smart strategy. Including diverse perspectives in global discussions leads to more robust, applicable, and most importantly, effective solutions for sarcoma patients worldwide.

Above all, it contributes to science. A global collaborative network enables access to more tumor samples, more dedicated researchers, and faster patient recruitment for clinical trials. In other words, it is the smartest way to accelerate scientific progress.

A shared responsibility, a collective commitment

Global cooperation is not an abstract ideal. I’m happy to say it has already become part of our daily practice. Within SELNET, we developed treatment guidelines for sarcomas with contributions from European and North American experts. Each country adapted and published the guidelines according to its local context. Physicians and patients alike gained a stronger voice. But we can go further.

Global cooperation also needs to involve the development of more inclusive research platforms. Discussions about access to new technologies must be brought to the table, and in that sense, cost-effectiveness must become a central topic in the sarcoma field for countries like Brazil. Ultimately, global cooperation means recognizing that excellence in sarcoma care cannot be a privilege for the few.

In the end, what I’ve learned in this journey is simple: rare diseases do not mean rare connections. In fact, the rarity of sarcomas has brought together some of the most committed, passionate, and creative communities I’ve ever encountered in medicine. And along the way, I’ve also gained new good friends.

Credits:  Portrait photo provided by Fernando Campos to SPAGN for publication; other photos by SPAGN.