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A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region

This article is a call for action to the relevant stakeholders to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region by looking into three main areas: (a) developing legislative definitions to confer enforceable protection, (b) creating or strengthening p...

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Detalles Bibliográficos
Autores principales: Soon, Swee-Sung, Lopes, Gilberto, Lim, Hwee-Yong, Wong-Rieger, Durhane, Bahri, Salmah, Hickinbotham, Lucy, Jha, Anand, Ko, Bor-Sheng, MacDonell, Diana, Pwu, Jasmine Roah-Fang, Shih, Ruby, Sirachainan, Ekaphop, Suh, Dong-Churl, Wale, Janet, Zhang, Xiao, Wee, Hwee-Lin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172816/
https://www.ncbi.nlm.nih.gov/pubmed/25223275
http://dx.doi.org/10.1186/s13023-014-0137-1
Descripción
Sumario:This article is a call for action to the relevant stakeholders to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region by looking into three main areas: (a) developing legislative definitions to confer enforceable protection, (b) creating or strengthening policies by objectively measuring the impact brought about by rare diseases and establishing platforms to reach out to the rare disease community, and (c) fostering collaboration across sectors and countries. It is hoped that these suggested actions can catalyze discussions and progress in the region.