Paradox of possibilities: the rare landscape in the Asia Pacific Region

Ritu Jain, Chiuhui Mary Wang, Lisa Foster, Eileen Yangyang Li, Yukiko Nishimura, Kin Ping Tsang
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Abstract

The Asia-Pacific (APAC) region, home to 60% of the global population, has the highest number of Persons Living with a rare disease (PLWRD). To promote more equitable societies, the Asia Pacific rare disease Organization (APARDO), established in 2015, has been developing its regional position to promote collaboration, increase awareness among stakeholders, explore equitable and affordable diagnosis and treatment, and improve health outcomes and quality of life for all PLWRD. The APAC region’s heterogeneous population and complex healthcare environment pose distinctive challenges in addressing rare diseases. Through conferences, webinars, and contributions to global initiatives, APARDO is fostering connectivity and providing a platform as a part of the global rare disease (RD) community to address shared challenges. The development of APARDO to strengthen its global presence as the representative of the APAC RD region is vital for a more equitable world.
可能性的矛盾:亚太地区的稀有景观
亚太地区(APAC)人口占全球人口的 60%,是罕见病患者(PLWRD)人数最多的地区。为了促进社会更加公平,成立于 2015 年的亚太罕见病组织(APARDO)一直在发展其区域立场,以促进合作,提高利益相关者的认识,探索公平和负担得起的诊断和治疗,并改善所有 PLWRD 的健康成果和生活质量。亚太地区的异质性人口和复杂的医疗保健环境为解决罕见病问题带来了独特的挑战。作为全球罕见病 (RD) 社区的一部分,APARDO 正在通过会议、网络研讨会和对全球倡议的贡献来促进连通性并提供一个平台,以应对共同的挑战。作为亚太地区罕见病 (RD) 的代表,APARDO 的发展对加强其在全球的影响力,对建立一个更加公平的世界至关重要。
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