A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region
Journal
Orphanet Journal of Rare Diseases
Journal Volume
9
Journal Issue
1
Date Issued
2014
Author(s)
Soon S.-S.
Lopes G.
Lim H.-Y.
Wong-Rieger D.
Bahri S.
Hickinbotham L.
Jha A.
MacDonell D.
Pwu J.R.-F.
Shih R.
Sirachainan E.
Suh D.-C.
Wale J.
Zhang X.
Wee H.-L.
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.
SDGs
Publisher
BioMed Central Ltd.
Type
journal article