Approval of the patient care line with rare diseases, Brazil’s Portaria 199 and its National Policy. What does that mean? What changes?

The concept of rare disease (RD), according to the World Health Organization (WHO), is a disease that affects up to 65 people in every 100 thousand individuals, that means 1.3 for each 2 thousand people. In Brazil, it is estimated that 13 million people have rare diseases (RDs), most of them reachin...

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Detalles Bibliográficos
Autores: Andrade, Maria Denise Fernandes Carvalho de, Carvalho, Ellaine Dóris Fernandes
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2017
País:Brasil
Institución:Universidade Federal do Ceará (UFC)
Repositorio:Revista de Medicina da UFC
Idioma:portugués
OAI Identifier:oai:periodicos.ufc:article/20090
Acceso en línea:https://periodicos.ufc.br/revistademedicinadaufc/article/view/20090
Access Level:acceso abierto
Palabra clave:Rare diseases
Descripción
Sumario:The concept of rare disease (RD), according to the World Health Organization (WHO), is a disease that affects up to 65 people in every 100 thousand individuals, that means 1.3 for each 2 thousand people. In Brazil, it is estimated that 13 million people have rare diseases (RDs), most of them reaching children, more than half of whom are diagnosed late. RDs are usually chronic, progressive, debilitating, unhealing, with decreasing loss of autonomy by the patient, who faces along with his family prejudices and lack of hope in healing and in therapies.