Abstract
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.
Highlights
Establishes the National Policy for total care for persons with rare diseases, approves the guidelines for gtter care for persons with UDUHGLVHDVHVXQGHUH[WHQWRIWKH8QL¿HG+HDOWK6\VWHP 686 DQGHVWDEOLVKHV¿QDQFLDOFRVWLQFHQWLYHV
We all know that rare diseases are neglected in Brazil! Some of us know that rare diseases are not well known! we all need to know that this may be different now!
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
Summary
Establishes the National Policy for total care for persons with rare diseases, approves the guidelines for gtter care for persons with UDUHGLVHDVHVXQGHUH[WHQWRIWKH8QL¿HG+HDOWK6\VWHP 686 DQGHVWDEOLVKHV¿QDQFLDOFRVWLQFHQWLYHV. ƉƉƌŽǀĂů ŽĨ ƚŚĞ ƉĂƟĞŶƚ ĐĂƌĞ ůŝŶĞ ǁŝƚŚ ƌĂƌĞ ĚŝƐĞĂƐĞƐ ƌĂnjŝůƐ WŽƌƚĂƌŝĂ ϭεε ĂŶĚ ŝƚƐ EĂƟŽŶĂů WŽůŝĐLJ tŚĂƚ ĚŽĞƐ ƚŚĂƚ ŵĞĂŶ tŚĂƚĐŚĂŶŐĞƐ
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