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Pacientes com doenças raras buscam apoio mútuo

E quando uma doença é rara a ponto de equipes médicas terem dificuldade no atendimento? Portadores de patologias desse tipo, famílias e grupos contam como é a luta por tratamento e por uma vida melhor

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Pandemia encarece ventilador mecânico e paciente aluga por R$ 2 mil

Paulo Cescon, 27, é um dos raros casos portadores de AME (Atrofia Muscular Espinhal) que chegam à idade adulta. Aparelho fornecido pelo estado é insuficiente ....

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Pacientes pedem que SUS forneça medicamento usado no tratamento da atrofia muscular - Notícias

Terapia genética pioneira tem sido autorizada mediante ação na Justiça ....

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Implementação da ampliação da triagem neonatal propiciará aos brasileiros o diagnóstico precoce de 53 tipos de doenças, entre elas, a atrofia muscular espinhal (AME)

A nova Lei aprovada que amplia a política de triagem neonatal, quando implementada, permitirá que os pacientes com AME recebam o cuidado adequado. Esse foi o tema do bate-papo online promovido pelo Correio Braziliense e a Biogen, que lançou um Manual de Políticas Públicas sobre o assunto ....

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Vivendo com AME, uma doença genética rara e degenerativa

Vivendo com AME, uma doença genética rara e degenerativa
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