Health Policies for Rare Disease Patients: A Scoping Review.
Luis Carlos Lopes-JuniorVictor Evangelista de Faria FerrazRegina Aparecida Garcia LimaSara Isabel Pimentel Carvalho SchuabRaphael Manhaes PessanhaGeisa Santos LuzMariana Rabello LaignierKarolini Zuqui NunesAndressa Bolsoni LopesJonathan Grassi RodriguesJuliana Almeida MoreiraFabrine Aguilar JardimFranciele Marabotti Costa LeitePaula de Souza Silva FreitasSilvia Regina BertoliniPublished in: International journal of environmental research and public health (2022)
The evaluation and monitoring of public policies directed at rare disease patients are urgent and necessary to improve and implement such policies with less bureaucracy and more determination for this unique population that requires timely and high-quality care.