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. 2025 Jan 9:17:17588359241309827.
doi: 10.1177/17588359241309827. eCollection 2025.

Enhancing rare cancer care in developing countries through patient advocacy: insights from the Desmoid Tumor Brazilian Association

Philippos Apolinario Costa  1 , Carolina Menezes  2 , Bruna Bianca Lopes David  3   4 , Georgia Garofalo  2 , Livia Prudente Barbieri  2 , Fernando Campos  5
Affiliations

Enhancing rare cancer care in developing countries through patient advocacy: insights from the Desmoid Tumor Brazilian Association

Philippos Apolinario Costa et al. Ther Adv Med Oncol. .

Abstract

Introduction: Desmoid tumors are soft-tissue neoplasms that can have profound impacts on the lives of people living with such diseases. As they are rare tumors, patients often have difficulty finding teams specialized in sarcomas and support networks. In low- and middle-income countries, the challenges are exacerbated due to a need for established networks and medication access.

Discussion: In this setting, patient advocacy groups are important in supporting affected people. To this end, the Desmoid Tumor Brazilian Association (DTBA) was established to help mitigate those challenges. This paper highlights the perspectives of patients with desmoid tumors living in Brazil, obtained in a nationwide survey, and discusses aspects related to access to specialists, medications, education, and awareness in Brazil.

Conclusions: The most commonly reported challenges in Brazil are access to educational material and specialists. The DTA continues to strive to improve support for people living in Brazil through initiatives such as Scientific and Educational Meetings, improving awareness, fostering science, and working on methods to facilitate access to medication and specialists.

Keywords: Brazil; aggressive fibromatosis; desmoid tumor; low or middle-income countries; patient advocacy.

Plain language summary

How patient advocacy groups can improve care for rare diseases: perspectives from a Desmoid Tumor Patient Group in a developing country Desmoid tumors are rare tumors that can have profound impacts on the lives of people living with such diseases, as they can invade surrounding structures, leading to deformities and pain. Managing these tumors can be challenging, as treatments often have strong side effects, and finding doctors or support groups with expertise in this condition is difficult. In low- and middle-income countries like Brazil, those difficulties are even higher due to limited access to specialists and medications. To address these issues, the Desmoid Tumor Brazilian Association (DTBA) was created, providing support to patients and their families, raising awareness, and improving education about this rare disease. This article gives the perspective of the DTBA, explores the experiences of people in Brazil living with desmoid tumors, and examines the challenges they face in accessing care, treatments, and reliable information. Resumo Leigo Os tumores desmoides são tumores raros que podem ter impactos profundos na vida das pessoas que convivem com essa doença, pois podem invadir estruturas ao redor, causando deformidades e dor. O manejo desses tumores pode ser desafiador, já que os tratamentos frequentemente apresentam efeitos colaterais fortes, e encontrar médicos ou grupos de apoio especializados nessa condição é difícil. Em países de baixa e média renda, como o Brasil, essas dificuldades são ainda maiores devido ao acesso limitado a especialistas e medicamentos. Para enfrentar esses desafios, foi criada a Associação Brasileira de Tumor Desmoide (ABTD), que oferece suporte a pacientes e suas famílias, promove conscientização e melhora a educação sobre essa doença rara. Este artigo apresenta a perspectiva da ABTD, explora as experiências das pessoas que vivem com tumores desmoides no Brasil e analisa os desafios que enfrentam para acessar cuidados, tratamentos e informações confiáveis. Resumen en Lenguaje Sencillo Los tumores desmoides son tumores poco comunes que pueden tener un impacto profundo en la vida de las personas que padecen esta enfermedad, ya que pueden invadir estructuras circundantes, provocando deformidades y dolor. Tratar estos tumores puede ser un desafío, ya que los tratamientos suelen tener efectos secundarios intensos, y encontrar médicos o grupos de apoyo especializados en esta condición es difícil. En países de ingresos bajos y medios, como Brasil, estas dificultades son aún mayores debido al acceso limitado a especialistas y medicamentos. Para abordar estos desafíos, se creó la Asociación Brasileña de Tumor Desmoide (ABTD), que brinda apoyo a pacientes y sus familias, promueve la concienciación y mejora la educación sobre esta enfermedad rara. Este artículo presenta la perspectiva de la ABTD, explora las experiencias de las personas que viven con tumores desmoides en Brasil y analiza los desafíos que enfrentan para acceder a la atención médica, los tratamientos y la información confiable.

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Conflict of interest statement

The authors declare that there is no conflict of interest.

Figures

Figure 1.
Figure 1.
Most common challenges faced by people with desmoid tumors. Categories were derived from participants’ open-ended qualitative responses. Each comment may include multiple challenges.
See this image and copyright information in PMC

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