MK FMHS Dean receives Star Golden Hearts Award 2024

Prof Dr Thong Meow Keong, Dean of the M. Kandiah Faculty of Medicine and Health Sciences (MK FMHS), was recognised as one of the ten recipients of the Star Golden Hearts Award 2024. This prestigious accolade, presented by The Star Media Group, celebrates individuals and organisations dedicated to impactful social work and fostering unity among Malaysians.

From left: Dato’ Hatijah Ayob, Prof Thong and The Star Media Group CEO Mr Chan Seng Fatt

Prof Thong’s recognition reflects his pioneering efforts in genetic healthcare for rare diseases, a field where he has worked tirelessly for over two decades. Nominated by Dato’ Hatijah Ayob, founder of the Malaysian Rare Disorders Society (MRDS), Prof Thong has played a key role in establishing MRDS, serving as its medical advisor since 2004. His contributions have been instrumental in addressing the needs of patients with rare diseases and advocating for equitable access to genomic healthcare.

Among his significant contributions are the establishment of Malaysia’s first genetic services, collaboration with non-governmental organisations (NGOs) and families to form support groups for rare disease patients, and his advocacy culminating in the successful hosting of World Rare Disease Day at the University of Malaya Medical Centre (UMMC) in February 2024. In the last three decades, over 4,000 medical students and nearly 1,000 specialists had the opportunity to learn from Prof Thong’s lectures and teaching sessions in clinical genetics and medical genomics, building a robust pipeline of experts. His efforts also earned him the American Society of Human Genetics Advocacy Award, marking the first time this global honour was awarded outside the United States.

Prof Thong sharing his thoughts on receiving the award

“This award is a testament to the collaborative efforts of various NGOs, academics, healthcare providers, and families in championing the rights and dignity of patients with rare diseases. It motivates us to continue advocating for equitable healthcare and to expand the impact of our work,” said Prof Thong. 

Prof Thong’s influence extends to the international stage through partnerships with organisations such as the World Health Organization (WHO) and the Global Genomic Medicine Collaborative (G2MC). He contributed to the development of WHO’s “Principles for Human Genome Data Access, Use and Sharing” expected to be finalised in 2025. As an elected steering committee member of G2MC, Prof Thong contributed to the PRECISE-IHCC conference in Singapore in August 2024, emphasising genomic medicine and rare diseases. His work also includes collaborations with the Asia-Pacific Alliance of Rare Diseases Organisations (APARDO) and the International Rare Diseases Research Consortium (IRDiRC) to advance genomic and rare disease-related issues globally.

In addition to his advocacy and educational efforts, Prof Thong has been instrumental in raising awareness and compassionate funding as well as clinical trials worth over RM100million for genetic therapeutics targeting rare diseases such as lysosomal storage diseases, Duchenne muscular dystrophy, and spinal muscular atrophy. His strategic fundraising approach includes collaboration with government agencies, NGOs, media outlets, crowdfunding campaigns and securing permits for life-saving medications. He has also engaged with mass media to highlight issues surrounding rare diseases through interviews, webinars, and public talks.

Prof Thong’s ongoing initiatives include launching newborn screening programmes for rare diseases in 2025, expanding funding for treatment and research through partnerships with various organisations to diagnose unknown malformation syndromes and learning disabilities, and developing tools for more accurate family health history assessments to identify individuals at risk for rare diseases.

His recognition at The Star Golden Hearts Award 2024 is a testament to his two decades of relentless dedication and groundbreaking contributions to improving the lives of individuals with rare conditions. Prof Thong urges clinicians to take an active role in learning more about rare diseases and participating in multi-disciplinary teams to advocate for their patients. Over the years, he has a strong team of doctors and specialists, genetic counsellors, genetic nurses and laboratory specialists as well as Universiti Malaya Medical Centre’s administrative team, Ministry of Health and various stakeholders working together. With his work, Prof Thong continues to inspire change, paving the way for a brighter future in rare disease care and genomic medicine.

Award recipients, organisers and guests at the award ceremony

About the Star Golden Hearts Award

Established in 2015, the Star Golden Hearts Award honours individuals and organisations for their innovative and impactful contributions to society. The selection criteria emphasise sustainability, leadership, and proven societal benefits.

In 2024, nominations were open from 10 June to 31 July, and the winners were announced on 12 November 2024 at Menara Star. Recipients were awarded a trophy, certificate, and RM15,000 cash prize.