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1. State of rare disease management in Southeast Asia.

Author

Shafie, Asrul Akmal, Chaiyakunapruk, Nathorn, Supian, Azuwana, Lim, Jeremy, Zafra, Matt, and Hassali, Mohamed Azmi Ahmad

Subjects
TREATMENT of rare diseases, DISEASE prevalence, ORPHAN drugs, HEALTH policy, DISEASE management, SYMPTOMS
Abstract

Background: Rare diseases, also referred to as orphan diseases, are characterised by their low prevalence with majority of them are chronically debilitating and life threatening. Given the low prevalence and the widely dispersed but very small patient base for each disease, there may often be a disproportion in the availability of treatments and resources to manage patients, spur research and train experts. This is especially true in Southeast Asian countries that are currently in the process of implementing or revising their universal health coverage schemes. This paper aims to examine the status of rare disease management in Southeast Asian countries. It will serve as the basis for a more active discussion on how countries in the region can address an under-recognised rare disease burden and enhance national and regional capacities.Methods: The study consists of literature reviews and key stakeholders interviews in six focus countries, including the Philippines, Singapore, Malaysia, Indonesia, Vietnam, and Thailand and five countries as best practice, comprising of France, Canada, Australia, Taiwan, and South Korea. Rare disease management initiatives across each country were examined based on the World Health Organization's framework for action in strengthening health systems.Results: The results suggest rare disease management remains challenging across Southeast Asia, as many of the focus countries face fundamental issues from basic healthcare systems to funding. Nonetheless, there are substantial improvement opportunities, including leveraging best practices from around the world and organising a multi-stakeholder and regional approach and strategy.Conclusions: Southeast Asian countries have made significant progress in the management of rare disease, but there remain key areas for substantial development opportunities. [ABSTRACT FROM AUTHOR]

Published
2016
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2. Proceedings of the CIAE Pre-Conference (61st, Las Vegas, Nevada, November 4-6, 2012)

Author

American Association for Adult and Continuing Education (AAACE), Commission for International Adult Education (CIAE)

Abstract

The Commission on International Adult Education (CIAE) of the American Association for Adult and Continuing Education (AAACE) provides a forum for the discussion of international issues related to adult education in general, as well as adult education in various countries around the globe. The following purposes summarize the work of the Commission: (1) To develop linkages with adult education associations in other countries; (2) To encourage exchanges between AAACE and associations from other countries; (3) To invite conference participation and presentations by interested adult educators around the world; and (4) To discuss how adult educators from AAACE and other nations may cooperate on projects of mutual interest and benefit to those served. The Commission holds its annual meeting in conjunction with the AAACE conference. The following papers are presented at the 2012 CIAE Pre-Conference: (1) Religious Rites and Celebrations As Frameworks for Lifelong Learning in Traditional Africa (Mejai B.M. Avoseh); (2) A Confucian Model for Scholarly Development (Elizabeth Anne Erichsen and Qi Sun); (3) The Use of Learning the Contract Within a University Setting in an Italian University (Monica Fedeli, Ettore Felisatti, and Mario Giampaolo); (4) The Cross-Culture Readiness Exposure Scale (CRES) (Emmanuel Jean Francois); (5) International History and Philosophy of Andragogy: Abbreviated for 2012 with Newer Perspective and Insights (John A. Henschke); (6) Exploring Cross-Cultural Learning Styles Differences of African and American Adult Learners (Alex Kumi-Yeboah and Waynne James); (7) An Educational Preparatory Program for Active Aging: Preliminary Results Based on Proactive Coping Theory (Ya-Hui Lee, Hui-Chuan Wei, Yu Fen Hsiao, Liang-Yi Chang, and Chen-Yi Yu); (8) Global Work Competencies and the Identification and Selection of Candidates for Expatriate Assignments (Arthur Ray McCrory); (9) Adult Education/Learning in South Africa: Promises and Challenges (Matata Johannes Mokoele); (10) Cross-Cultural Use of Surveys and Instruments in International Research: Lessons Learned From A Study in Turkey and the United States (Claudette M. Peterson, Anita Welch, Mustafa Cakir, and Chris M. Ray); (11) English Only? English-Only Policies, Multilingual Education and its Ramifications on Global Workforce Productivity (Orlando A. Pizana and Alex Kumi-Yeboah); (12) Reflections On A Research Experience at an International Treasure: The Alexander N. Charters Library of Resources for Educators of Adults (Lori Risley); (13) Bridging Adult Education Between East and West: Critical Reflection and Examination of Western Perspectives on Eastern Reality (Qi Sun and Elizabeth Anne Erichsen); (14) The Challenges and Prospects of Adult Education Programmes in Nigerian Universities (Nneka A. Umezulike); (15) The Perceived Impact of Women for Women International (WFWI) Non-formal Learning Programmes for Rural Women in Nigeria (Loretta C. Ukwuaba and Nneka A. Umezulike); (16) Perceptions of Needed Attitudinal Competencies Compared by Geographical Region (Helena Wallenberg-Lerner and Waynne B. James); (17) Identifying Intercultural Sensitivity Competencies Through Focus Group Research (Melanie L. Wicinski and Arthur Ray McCrory); and (18) Measuring Intercultural Sensitivity at the Army Medical Department Center and School: The IRB Process--Challenges and Lessons Learned (Roberta E. Worsham and Melanie L. Wicinski). Individual papers contain figures, tables, references and footnotes.

Published
2012