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APARDO operates across a vast geographical area comprising 62 nations in Asia-Pacific [UNFPA] with
an estimated 60% of the world population, including India and China, the two most populous countries
globally. Notwithstanding the tremendous geographic and population spread, the alliance of Asian patient
organizations is similar in its representation to other RD alliances operating at a regional level, such as the
Rare Disease Europe (EURORDIS) and Ibero-American Alliance for Rare, Orphan or Infrequent Diseases
(ALIBER). Such regional alliances typically leverage unifying aspects (e.g., common gaps, objectives) to
facilitate operations and shared causes. In Europe, the European Union and the common market framework
provided the first opportunity for EURORDIS to unify patient groups from European countries on a
common objective. Similarly, ALIBER (a partnership between Ibero-American countries represented by the
Portuguese National Alliance for Rare Diseases and the Spanish National Alliance for Rare Diseases) seeks
to address the common challenges encountered in Spanish- and Portuguese-speaking regions. In contrast to
the two alliances, APARDO operates in a broad geographical region with heterogeneous cultures, languages,
and varying levels of development and readiness within health systems. While the organization draws on
shared experiences with RDs and a commitment to tackle related issues and gaps, the lack of a unified
economic or political framework (currently and in the near future) complicates the possibilities of working
towards common goals. Nonetheless, such diversity has also yielded success stories through concerted and
committed advocacy in the APAC nations (see Table 1 for a snapshot of the RD landscape in the countries
represented in the APARDO membership). As Table 1 indicates, significant advances and developments are
taking place across the region, among the higher-income and more technologically advanced countries/
regions such as Japan, Korea, Taiwan, Hong Kong, China, and Australia, as well as those with developing or
emerging RD research and health, social, and community services, notably India, Malaysia, Philippines,
Indonesia, and Vietnam.

Looking ahead, the alliance has the potential to play a critical role in achieving health equity, improved
diagnosis, and access to treatment and supportive care through strengthening its patient network,
deepening engagement with stakeholders, and maintaining ongoing programs of education and capacity
building. These objectives necessitate advocacy for contributing to specific policies to provide both visibility
and improvement in the lives of those with RDs and their families.

Compared to EURORDIS and ALIBER, APARDO is the youngest regional alliance. The pioneer
EURORDIS was established in 1997, ALIBER in 2013, and APARDO registered as recently as 2015. As a
younger alliance, APARDO is on the path of strengthening as an organization and developing its
membership. As of 2023, APARDO has no dedicated office space, has one part-time staff as an
administrator, and relies heavily on the in-kind time contribution of its board of directors and members.
Further investment is necessary to consolidate the organization and hire dedicated staff capable of handling
secretarial duties, fundraising, and implementing strategic plans.

A review of APARDO activities and contributions
APARDO was set up as a patient alliance of RD stakeholders from the APAC region. Its objectives were to
empower national RD organizations to advocate for better outcomes and quality of life for PLWRD and
caregivers. It serves as a platform for promoting best practices and the exchange of information across the
region. The focus of its initial activities has been to identify and assess solutions for gaps between patients
and policies, as well as to amplify the voice of stakeholders, influence policies, and strengthen regional
initiatives.

Along these lines, the organization has raised capital to enable the delivery of educational programs and
organize annual conferences in Taiwan (2019), virtually in 2020 and 2021, and in Thailand in 2022 and in