WORKING GROUP

The main objectives of the group:

• Increase of pathologists in SELNET pathology network by involving at least one pathologist referral specialized in bone and soft tissue tumors from each country in Latin and Central America, who work in coordination, share cases and diagnostic tools, and review sarcoma diagnoses.
• Discuss the challenging cases during SELNET meeting of multidisciplinary tumor review or in special SELNET educational events dedicated to pathologists.
• Areas of focus or current activities: write together a position paper about the latest commercially available immunohistochemical antibodies to improve the diagnostic approach discussing the pre-analytic and post-analytic problems with antibodies currently in use.

Chairs:

• Alberto Righi, Pathologist. IOR- Istituto Ortopedico Rizzoli.
• Marco Gambarotti, Pathologist. IOR- Istituto Ortopedico Rizzoli.

The “Referral Centers & Networking Working Group” focuses on the identification of SELNET centers and strengthening the collaboration between them, developing structured
referral pathways, and fostering networking and multidisciplinary care.

Key objectives of the group include:

• Identifying, mapping and strengthening SELNET centers: supporting the development of expert sarcoma centers network in participating countries, promoting adherence to
  established standards of care.
• Improving/fostering patient referral pathways: developing efficient and transparent referral systems to facilitate access to specialized expertise, especially in regions with
  limited sarcoma care infrastructure.
• Enhancing multidisciplinary collaboration: encouraging cooperation between centers to share best practices, clinical guidelines, and treatment approaches, by exploring the use of
  telemedicine, virtual tumor boards, and digital tools to facilitate real-time expert consultations and improve care coordination.
• Developing network infrastructure for national sarcoma referral centers: fostering a structured framework to support the bottom-up development of national sarcoma referral
  centers, fostering integration with international networks while ensuring locally adapted, sustainable models of care.

Chair:

• Salvatore Provenzano, Medical Oncology. Nazionale dei Tumori di Milano (INT).

Objectives of the Abdominal and Retroperitoneal Sarcomas Working Group

• Identify and address the main challenges in the treatment of abdominal and retroperitoneal sarcomas in Latin America.

• Improve diagnostic procedures, including:

  • Standardisation of criteria and practices.

  • Proper use of diagnostic tools.

• Optimise surgical practices by reviewing and improving current protocols.

• Promote the collection of epidemiological data to improve understanding of the regional situation regarding sarcoma.

Chairs:

• Nicolas Devaud, Surgeon Oncologist. Instituto Nacional del Cáncer- Santiago.
• Dorian García, Surgeon Oncologist. Instituto Nacional de Cancerología (INCAN).

Objectives of the Extremities Working Group:

• Promote educational activities, including:
  • Development of webinars on TGCT and desmoid tumours.
• Strengthen and expand the patient registry, ensuring:
  • Its continuity and updating in participating centres.
  • The inclusion of data relevant to clinical practice and research.

Chairs:

• Eduardo Ortiz, Orthopedic Oncologist. Hospital Universitario La Paz.
• Marcos Galli, Orthopedic Oncologist. Hospital Universitario Austral.
• Andres Lores, Traumatologist Oncologist. Clinica IMBANACO.

• To develop translational and observational studies on patient tumor samples and real world data.
• To establish collaborations to test novel therapeutic options in preclinical models of sarcoma

• Solitary Fibrous tumor
• Angiosarcoma
• Extraskeletal Myxoid Chondrosarcoma
• Desmoplasic Small Round Cell Tumor
• GIST (Under discussion)
• TCGT (Under discussion)

Members:

• David Moura (Chair), Molecular Biologist. FJD- Instituto de Investigación Fundación Jimenez Diaz.
• Gladys Mercedes Estigarribia, Biochemistry. IRIS-UNCA.
• Giovana Tardin Torrezan, Molecular Biologist. A.C.Camargo Cancer Center.

Patient advocacy groups for rare diseases in Latin America are essential to overcome the region’s unique challenges, such as limited resources, fragmented healthcare systems, and socioeconomic inequalities. Key goals include raising awareness and educating the public and healthcare providers, improving access to treatments and medications, offering emotional and social support, and driving policy changes to secure patient rights and healthcare access. They also promote research and innovation, empower patients, and connect with international organizations for global collaboration. Despite facing significant barriers like lack of awareness, social stigma, and political obstacles, patient advocacy groups can help amplify voices, improve healthcare policies, and foster lasting change in rare disease care across Latin America.

Recent achievements of the Sarcoma and Desmoid Tumor Brazilian Association include being the first Latin American advocacy group invited to participate in the Global Consensus for Desmoid Tumors in 2022, presenting at CTOS 2023 and the ESMO Rare Cancers Congress 2024, and creating a joint community, Sarcomunicandonos, with SPAGN to promote educational webinars and materials in Spanish and Portuguese. Additionally, they published their first article in 2025, focusing on enhancing rare cancer care in developing countries through patient advocacy.

Members:

• Bruna David (Chair), Medical Oncologist. INCAN- Instituto Nacional de Cancer.