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Jain et al. Rare Dis Orphan Drugs J 2024;3:8 Rare Disease and
DOI: 10.20517/rdodj.2023.42
Orphan Drugs Journal

Perspective Open Access

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

1
1,5
1,4
Ritu Jain 1,2 , Chiuhui Mary Wang 3 , Lisa Foster , Eileen Yangyang Li , Yukiko Nishimura , Kin
Ping Tsang 6
1
Asia Pacific Alliance of RD Organisation, Singapore 188976, Singapore.
2
School of Humanities, Nanyang Technological University, Singapore 639798, Singapore.
3
Rare Diseases International, Paris 75014, France.
4
Chinese Organization for Rare Disorders, Beijing 100077, China.
5
Advocacy Service for Rare and Intractable Diseases (NPO ASrid), Tokyo 1130033, Japan.
6
Rare Disease Hong Kong, Hong Kong.
Correspondence to: Dr. Ritu Jain, Language and Communication Centre, Nanyang Technological University, 48 Nanyang
Avenue, HSS-02-21, Singapore 639818, Singapore. E-mail: ritujain@ntu.edu.sg
How to cite this article: Jain R, Wang CM, Foster L, Li EY, Nishimura Y, Tsang KP. Paradox of possibilities: the rare landscape in
the Asia Pacific Region. Rare Dis Orphan Drugs J 2024;3:8. https://dx.doi.org/10.20517/rdodj.2023.42
Received: 11 Oct 2023 First Decision: 12 Dec 2023 Revised: 16 Feb 2024 Accepted: 27 Feb 2024 Published: 29 Feb 2024
Academic Editor: Daniel Scherman Copy Editor: Fangling Lan Production Editor: Fangling Lan

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.

Keywords: RDs, patient organizations, Asia-Pacific, policy, diversity

© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0
International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, sharing,
adaptation, distribution and reproduction in any medium or format, for any purpose, even commercially, as
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