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Asia-Pacific Nations Unite to Transform Rare Disease Care with Genomics

Ten Asia-Pacific nations, including India, China, and Malaysia, launched the HGP2 Rare Disease Alliance in Kuala Lumpur to enhance regional collaboration in rare disease care. The alliance, co-initiated by BGI Group, targets gaps in diagnostic capacity, access to precision medicine, and fragmented standards. Members signed a joint declaration reaffirming their commitment to advancing rare disease diagnosis and treatment. Experts highlighted the role of genetic technology and AI in transforming healthcare systems for rare diseases.

Key Points: Asia-Pacific Alliance Launched for Rare Disease Care

  • Alliance launched in Kuala Lumpur with 10 APAC nations
  • Co-initiated by BGI Group and regional partners
  • Aims to improve diagnosis, genomics, and public health response
  • Signed Joint Declaration to advance rare disease care
2 min read

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

10 APAC nations launch HGP2 Rare Disease Alliance to boost collaboration in rare disease diagnosis, genomics, and precision medicine.

"Genetic technology and artificial intelligence will drive the transformation of healthcare systems in the field of rare diseases. - Thong Meow Keong"

Kuala Lumpur, May 11

The Human Genome Project II Rare Disease Alliance of the Asia-Pacific Region 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

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Reader Comments

P
Priya S
Finally something positive from the region. The mention of 'fragmented standards' hits home – in India, rare disease patients often have to beg state governments for enzyme therapy. Hope this alliance cuts through the bureaucracy and delivers real equity. No more patients dying just because they can't afford ₹10 lakh per month.
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Nisha Z
Good to see ASEAN working with China and India on healthcare. But let's be honest – China's Belt and Road has been controversial. Is this alliance really about saving lives or another soft power move? Still, if it brings cheaper genetic testing to our rural areas, I'm all for it.
R
Rohit P
Massive step forward! As someone whose cousin suffered for 7 years before a rare neuromuscular disease was diagnosed, this is a game-changer. Standardisation across Asia-Pacific means patients won't have to fly to Singapore or USA for a biopsy. Hope India's ICMR and DBT are onboard from Day One.
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Ananya R
The diversity of the alliance is impressive – from Pakistan to Philippines to Nepal. But where is the roadmap? We've seen many MoUs that gather dust. Also, with AI and genomics, we must address the ethical side: data privacy, consent in rural communities, and avoiding another 'digital colonisation'. Important to get it right.
K
Kavya N
This is exactly what the Asia-Pacific needs. In Kerala, we have a state-level rare disease policy but it's not connected to national databases. If this alliance can create a shared platform for genetic variants across our region, we can diagnose rare diseases in weeks, not years. Let's hope the political tensions don't slow down the science. 🧬

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