Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide

Organization profile: 

The Brazilian Desmoid Tumor Association began its activities in 2021, with the aim of welcoming diagnosed patients. When receiving a diagnosis of a rare disease, patients often feel alone in their journey. Our goal is to show them that they are not alone and that there is a support network in Brazil.

Furthermore, we aim to:

- Raise awareness among health professionals regarding the existence of desmoid tumor;

- Disseminate information so that patients are directed to professionals specialized in sarcomas;

- Maintain a patient registry, with useful data to support research;

- Influence the choices of stakeholders in the health and pharmaceutical sectors to boost scientific research and facilitate access to treatments and patient health. Awareness brings early diagnosis, which brings better quality of life and cure.