@article{cfbd60e3df5d4b428ce3940f5effefd8,
title = "A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region",
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.",
keywords = "Access to care, Asia-Pacific region, Challenges, Policy",
author = "Soon, {Swee Sung} and Gilberto Lopes and Lim, {Hwee Yong} and Durhane Wong-Rieger and Salmah Bahri and Lucy Hickinbotham and Anand Jha and Ko, {Bor Sheng} and Diana MacDonell and Pwu, {Jasmine Roah Fang} and Ruby Shih and Ekaphop Sirachainan and Suh, {Dong Churl} and Janet Wale and Xiao Zhang and Wee, {Hwee Lin}",
note = "Funding Information: The organization of the Asian Expert Forum for Rare Diseases (15–16 June 2013, Seoul) was funded by Novartis Asia Pacific Pharmaceuticals Pte. Ltd. The facilitation and overall management of its organization was conducted by Mudskipper Business Consulting (Shanghai) Limited. All authors attended the forum. HW, GL and HL attended the forum in the capacity of Co-Chairpersons. The funds covered the meeting venue cost, event secretariat support, two nights' accommodation for each overseas participant. Support for the meeting was to encourage dialogue for general access challenges of care and treatment for rare diseases in the region without driving any specific agenda. The publication fee of this article is supported using funds administered by the International Society for Pharmacoeconomics and Outcomes Research Singapore Chapter (ISPOR-S). These funds are the balance from a 2012 event (Asian Expert Forum for Oncology Drug Access) in Singapore that was supported by funds from Novartis Pharmaceuticals Asia Pacific Pte Ltd (USD39,000 in all, covering meeting venue cost, event secretariat support, one night's accommodation for each overseas participant, and USD1,000 per diem for each participant). ISPOR-S has no involvement in this article. Publisher Copyright: {\textcopyright} 2014 Soon et al.; licensee BioMed Central Ltd.",
year = "2014",
month = sep,
day = "16",
doi = "10.1186/s13023-014-0137-1",
language = "English (US)",
volume = "9",
journal = "Orphanet journal of rare diseases",
issn = "1750-1172",
publisher = "BioMed Central",
number = "1",
}