Associação de pacientes ajuda a acelerar pesquisas sobre ataxias hereditárias

Receber o diagnóstico de uma doença rara é apenas o começo de uma jornada que envolve acesso à informação, tratamentos e pesquisas clínicas.Nesta entrevista especial da MIT Technology Review Brasil, Marla Maia, diretora-geral da Associação Brasileira de Ataxias Hereditárias e Adquiridas (ABAHE), explica como as associações de pacientes contribuem para fortalecer a pesquisa científica, ampliar o acesso aos estudos clínicos e representar a voz dos pacientes nas decisões sobre novas tecnologias em saúde.Assista à entrevista completa.

Episode metadata supplied by the publisher feed · Published Aug 3, 2026

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Associação de pacientes ajuda a acelerar pesquisas sobre ataxias hereditárias

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