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Philippines) lead to barriers in outreach to RD patients, particularly in remote areas, making an assessment
of needs, care integration and delivery, and dissemination of information and training a challenging
undertaking. This is exacerbated by a lack of reliable epidemiological data on prevalence and socioeconomic
burden, sparse diagnostic resources and patient registries, approved and/or funded medical treatment, and
more. The lack of such understanding of the needs of the target population further impedes investment in
RD research.

Nevertheless, there are great efforts across APAC to address challenges in different contexts. LMICs have
useful skills and best practices to share, as demonstrated by responses to the COVID-19 pandemic. The
experience of the SARS outbreak in 2003, as well as the ability to efficiently and creatively use limited
resources for maximum impact, has come to the fore more than once. Examples include the ease of
adapting telemedicine and digitalization of organizational operations for continuity and broadened
impact [62,63] . Furthermore, despite its challenges, many countries have persevered to expand the protection of
RD patients. For instance, expanded newborn screening programs are implemented in the Philippines,
which is serving as a model for access across remote islands and limited resources .
[64]
Active patient engagement and advocacy, such as in Europe, has been successful in pushing changes in
policies and supporting better diagnosis, treatment, and quality of life for PLWRD. However, most APAC
countries lack the necessary support and motivation for patients and patient organizations to participate in
various levels and topics related to their disease, and to speak out about gaps between their unmet needs and
existing healthcare services. Global policy advancements, such as the UN Resolution “Addressing the
challenges of persons living with a RD and their families” and Political Declaration on Universal Health
Coverage including RDs, lend tools for national engagement and advocacy [65,66] .

CONCLUSION
The APAC region, with approximately 60% of the global world population, is estimated to have the highest
absolute number of people with RD. Therefore, further development of APARDO to strengthen its global
position as the representative of the APAC RD region is vital for a more equitable world. This requires
balanced sustainable resourcing, unified global commitments, agreements, and unified collaborations. To
ensure that no one is left behind, it is imperative for the APAC region to adopt a holistic view of the global
RD community, with an emphasis on active participation from developing and Low-Middle-Income
Countries. A sustainable model for the APAC region would greatly benefit from enhanced connectivity and
regional initiatives that encompass various RD stakeholders of the region and within the constraints and
realities unique to APAC. This endeavor must start with the right mindset and commitment not only from
developed nations but also (no matter how modest), developing ones. Such concerted efforts would
empower the RD community, enabling more effective addressing of key issues such as access to
therapeutics, care coordination, stigma and discrimination reduction, and the digitalization of patient
organization operations.

DECLARATIONS
Acknowledgments
We gratefully acknowledge the current and past APARDO Directors for their valuable contribution to the
setting up and nurturing of APARDO.

Authors’ contributions
Made substantial contributions to the conception and design of the manuscript and performed data analysis
and interpretation: Jain R, Wang CM