Open AccessApproval of the patient care line with rare diseases, Brazil’s Portaria 199 and its National Policy. What does that mean? What changes?
Author(s) -
Maria Denise Fernandes Carvalho de Andrade,
Ellaine Dóris Fernandes Carvalho
Publication year - 2017
Publication title -
revista de medicina da ufc/revista de medicina da universidade federal do ceará
Language(s) - English
Resource type - Journals
eISSN - 2447-6595
pISSN - 0100-1302
DOI - 10.20513/2447-6595.2017v57n2p6-7
Subject(s) - autonomy , rare disease , medicine , family medicine , disease , pediatrics , health care , gerontology , demography , political science , pathology , sociology , law
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.