Asian nations launch alliance to enhance regional collaboration in rare disease care

Kuala Lumpur: The Human Genome Project II Rare Disease Alliance of the Asia-Pacific Region (HGP2 RaDiAnce-APAC) was launched here on Sunday to advance regional collaboration in rare disease care.

The launch meeting brought together clinical experts, researchers in genomics, and representatives from public health and policy sectors from 10 APAC countries, including Malaysia, India, Vietnam, Thailand, Indonesia, Nepal, China, the Philippines, Cambodia and Pakistan, reports Xinhua news agency.

The alliance, co-initiated by China’s BGI Group and regional partners from across the Asia-Pacific, aims to strengthen regional collaboration in rare disease diagnosis, research in genomics, capacity building and public health response, while addressing persistent gaps in diagnostic capacity, uneven access to precision medicine, and fragmented standards and experience-sharing across the Asia-Pacific region.

During the event, alliance members signed the Joint Declaration of the HGP2 RaDiAnce-APAC Initiative, reaffirming their shared commitment to advancing regional collaboration in rare disease care.

Nor Fariza Binti Ngah, deputy director-general of health (research and technical support) at the Malaysian Ministry of Health, said that stronger regional cooperation on rare diseases across the Asia-Pacific is of great importance.

Zilfalil Bin Alwi, professor of medical genetics and senior consultant paediatrician and clinical geneticist at Universiti Sains Malaysia, said the diversity and inclusiveness of the alliance demonstrate the significance of the initiative.

Hou Yong, general manager of BGI Genomics, a subsidiary of BGI Group, said that HGP2 RaDiAnce-APAC will help advance the standardisation, intelligent transformation, and equitable accessibility of rare disease diagnosis and treatment across the Asia-Pacific region.

Thong Meow Keong, professor at Universiti Tunku Abdul Rahman and visiting consultant clinical geneticist at University Malaya Medical Centre, said that the Asia-Pacific region is currently advancing the HGP2, focusing on the development of rare disease diagnosis, genetic technology, and precision public health.

With millions of people worldwide affected by rare diseases, he expressed his expectation that genetic technology and artificial intelligence will drive the transformation of healthcare systems in the field of rare diseases.

IANS