APARDO 10th Anniversary Conference

The Asian Pacific Alliance of Rare Disease Organizations (APARDO) held its 10th Anniversary Annual Conference in Jakarta, Indonesia, from November 28 to 30. Centered on the theme “Advancing Regional Collaboration for Rare Disease Equity,” the event brought together 167 representatives from patient groups, physicians, industry professionals, and government officials across more than 13 countries in the Asia-Pacific region.

The conference featured keynote speeches, panel discussions, and workshops to share national initiatives and institutional experiences. Malaysia successfully established a national rare disease policy through its “Rare but Real” photography exhibition; Japan's ASrid shared its J-Rare online platform, empowering patients to participate in research; Indonesia introduced its government-led National Genome Project, demonstrating a viable model for developing countries to advance rare disease screening and diagnosis.

Representatives from participating countries focused on three key issues—“drug access,” “screening and diagnosis,” and “clinical care”—for in-depth discussions. They explored common challenges such as the high cost of rare disease drugs, difficulties in diagnosis, and disparities in care resources. A consensus for action emerged: improving drug accessibility through collective procurement and Health Technology Assessment (HTA), comprehensively promoting newborn screening and health education, and establishing multidisciplinary care teams that incorporate family support. 

Conference Chair Dr. Durhane proposed establishing an “Asia-Pacific Core Rare Disease Registry” and a shared genetic database to enhance regional testing capabilities.

Taiwan has accumulated extensive experience in rare disease healthcare and systems. TFRD welcomes the deepening of Asia-Pacific collaboration and looks forward to contributing together to global public health.

Translator: David Lee (Becker Muscular Dystrophy)