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

نویسندگان

  • Swee-Sung Soon
  • Gilberto Lopes
  • Hwee-Yong Lim
  • Durhane Wong-Rieger
  • Salmah Bahri
  • Lucy Hickinbotham
  • Anand Jha
  • Bor-Sheng Ko
  • Diana MacDonell
  • Jasmine Roah-Fang Pwu
  • Ruby Shih
  • Ekaphop Sirachainan
  • Dong-Churl Suh
  • Janet Wale
  • Xiao Zhang
  • Hwee-Lin Wee
چکیده

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.

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عنوان ژورنال:

دوره 9  شماره 

صفحات  -

تاریخ انتشار 2014