The Genomics for Kids in ASEAN programme, a collaboration between Temasek Foundation and KKH Maternal and Child Health Research Institute, is revolutionising rare disease diagnosis across Southeast Asia. Since its inception in 2022, the programme has provided genetic testing to 510 families in Singapore, Malaysia, the Philippines, and Vietnam, achieving a 52% diagnostic success rate—well above the international average of 25 to 40%. This initiative has significantly reduced the average diagnostic time from 7.6 years to mere weeks.
The programme’s achievements were highlighted at the KKH Rare Disease Day, attended by Senior Minister of State, Janil Puthucheary. Associate Professor Tan Ee Shien, Programme Lead, emphasised the programme’s role in enhancing regional healthcare collaboration and creating a genomic database tailored to the ASEAN population. “The ultimate goal is to advance precision medicine,” Tan stated, highlighting the importance of diagnostics and treatments tailored to the region’s genetic diversity.
Rare diseases, often genetic, affect fewer than one in 200,000 individuals globally. In ASEAN, over 10 million people live with undiagnosed rare diseases. The programme aims to end the diagnostic “odyssey” for many families, providing life-saving interventions and reducing misdiagnoses.
Beyond diagnosis, the programme is building a sustainable ecosystem for genomic medicine in the region. This includes launching ASEAN’s first genomic database, offering specialised education, and developing infrastructure for genetic screening and research. The initiative, supported by over S$2.8m from Temasek Foundation, is set to transform healthcare systems, enabling better diagnosis and care for future patients.
