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

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

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Article number137
JournalOrphanet journal of rare diseases
Volume9
Issue number1
DOIs
StatePublished - Sep 16 2014

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Keywords

  • Access to care
  • Asia-Pacific region
  • Challenges
  • Policy

ASJC Scopus subject areas

  • Genetics(clinical)
  • Pharmacology (medical)

Cite this

Soon, S. S., Lopes, G., Lim, H. Y., Wong-Rieger, D., Bahri, S., Hickinbotham, L., Jha, A., Ko, B. S., MacDonell, D., Pwu, J. R. F., Shih, R., Sirachainan, E., Suh, D. C., Wale, J., Zhang, X., & Wee, H. L. (2014). A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region. Orphanet journal of rare diseases, 9(1), [137]. https://doi.org/10.1186/s13023-014-0137-1