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Contradictions of public health policies geared to rare disorders: the example of the Osteogenesis Imperfecta Treatment Program in the Brazilian Unified Health System (SUS)

The scope of this paper is to examine the process of consolidation of a public health policy in Brazil geared to a rare disorder, namely osteogenesis imperfecta, the treatment for which has fallen under the responsibility of the Brazilian Unified Health System (SUS) after the publication of Ministerial Ruling GM/MS2305/2001. The implementation of this law has been accompanied by many contradictions, especially with respect to therapeutic decisions and the strengthening of the specialized network for addressing this condition. These attitudes are clearly shown both by the drafting process and the final text of the new law (Ministerial Ruling 714/2010).

Osteogenesis imperfecta; Public health policy; Rare disorders


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