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INTRODUCTION
The Asia-Pacific (APAC) region perhaps best illustrates the well-known paradox of rarity: With over
[1]
4.7 billion people, or more than half of the world’s population, residing in this region , it is characterized by
extreme heterogeneity of cultures, languages, and socioeconomic backgrounds. Within this large
[2-4]
population, it is estimated that more than 258 million individuals are living with rare diseases (RDs) . The
region’s heterogeneous population and complex healthcare environment pose distinctive challenges in
addressing RDs. At the same time, the magnitude of the region, the size of the RD population, and the
readiness of various stakeholders hold the promise of possibilities for novel solutions and approaches
towards health equity. Many countries in the region increasingly recognize the importance of developing
comprehensive policies and strategies to support persons living with RD (PLWRD) and their families
through concerted efforts in research, diagnosis, treatment, patient support, and public awareness
[5-7]
initiatives . Nonetheless, the establishment of collaborative initiatives among healthcare professionals,
researchers, patient organizations, and governmental entities remains vital to ensure equitable access to
comprehensive care and support for PLWRD throughout the APAC region. Towards this goal, Asia Pacific
Alliance of Rare Disease Organisation (APARDO) was created to effectively and collectively address the
challenges and enhance outcomes for PLWRD in the APAC region . This article presents the perspective of
[8]
APARDO on the learning of collaboration among RD patient groups, as well as the opportunities for
strengthening efforts across the heterogeneous region.

APAC regional RD policy context
Despite the consolidated acronym APAC, which may imply a unified approach, the reality presents a
diverse landscape with varying strategies and levels of recognition of the pressing challenges faced by
PLWRD and their families. Make towards this aim, over the past thirty years, many countries have set up
dedicated policies or legislation to provide provisions to address the needs of PLWRDs. Japan remains one
of the first countries to implement a dedicated policy in 1993 . The 1993 Japanese Pharmaceutical Affairs
[5-7]
Law (now the Pharmaceuticals and Medical Devices Act) was revised to define rare and intractable diseases,
collectively referred to as NANBYO. Furthermore, under the same law, measures were taken to promote
research and development of orphan drugs, and review procedures were improved. Similarly, Australia has
demonstrated leadership in forward-thinking RD policies. The Australia Therapeutic Goods Regulations
1997 provided guidance for orphan drug programs and incentives to market these medicines. In 2020, the
"National Strategic Action Plan for RDs" was launched in Australia, focusing on collaboration between
healthcare providers, researchers, patient organizations, and the government to improve coordination,
research, and treatment access for RDs. Between 2000 and 2010, dedicated legislations on RD or orphan
medicines were set up in Singapore, South Korea, Taiwan, and subsequently, between 2010-2021, in
Hong Kong and the mainland of China, India, Indonesia, Malaysia, Philippines, and Thailand [9-12] . Further,
while New Zealand has made a commitment to a strategy for RDs, no policy has been established yet .
[13]
Despite the existence of RD policy, many countries do not have a specific policy context for RDs. The extent
and focus of the policies differ across countries, ranging from public awareness, patient support, research,
diagnosis, and treatment access. Hence, the level of implementation varies vastly within the APAC region.

Unique characteristics of APARDO
APARDO, established in 2015 and as stipulated in the strategic plan, seeks to provide a patient advocacy-led
alliance of RD stakeholders from the APAC region representing rare-disease organizations and operates
under a constitution . The Alliance’s mission is to work effectively with national and regional policy
[8]
makers, industry, and healthcare professionals to increase awareness, facilitate collaborations to explore
equitable and affordable diagnosis and treatment, and improve health outcomes and quality of life for all
patients and their caregivers. By 2023, APARDO has grown to an alliance of 29 member organizations from
15 countries.