As doenças raras e os casos menos típicos da medicina dificilmente estão no foco dos grandes estudos, nos materiais de pesquisa ou mesmo com status de prioridade em saúde pública.

Com exceção dos Estados Unidos, país que mais investe no conhecimento de doenças raras, muitas sociedades não só ignoram essas ocorrências como não oferecem subsídios para pesquisa, tratamento e cura.

Onde procurar mais informações?

Nos Estados Unidos entre muitas iniciativas nas quais o próprio governo participa e investe, existe o NORD ou National Organization for Rare Disorders. O NORD é a federação de organizações de saúde voluntárias dedicada a ajudar pessoas com doenças “órfãs”. O NORD tem como missão identificar, tratar e curar pacientes com doenças raras.

Segundo o NORD existem catalogadas mais de 7000 doenças raras que acomentem dezenas de milhões de pessoas. Aqui vamos descrever aquelas que fazem parte dos capítulos da Cirurgia pediátrica.

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