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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...
| Autores principales: | , , , , , , , , , , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2014
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| 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 |
| _version_ | 1782336076408422400 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Soon, Swee-Sung |
| collection | PubMed |
| description | 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. |
| format | Online Article Text |
| id | pubmed-4172816 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2014 |
| publisher | BioMed Central |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-41728162014-09-25 A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region 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 Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2014-09-16 /pmc/articles/PMC4172816/ /pubmed/25223275 http://dx.doi.org/10.1186/s13023-014-0137-1 Text en © Soon et al.; licensee BioMed Central Ltd. 2014 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
| spellingShingle | Letter to the Editor 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 A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title | A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title_full | A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title_fullStr | A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title_full_unstemmed | A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title_short | A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region |
| title_sort | call for action to improve access to care and treatment for patients with rare diseases in the asia-pacific region |
| topic | Letter to the Editor |
| url | 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 |
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