BANGKOK, April 1 — The Medical Genetics and Genomics Association, Medical Association of Thailand and Thai Rare Disease Foundation together with Takeda hosted the 2nd Southeast Asia Rare Disease Summit in Bangkok on March 18 to address the complex challenges posed by rare diseases and ensure improvement for patients.
The summit served as a pivotal platform for stakeholders to address pressing issues, exchange insights and strategise meaningful advancements to improve diagnosis, access to treatment, health equity as well as patient empowerment with the aim of amplifying the patient voice for sustainable change.
The summit also brought about the founding of the Asean Rare Disease Consortium by five rare disease patient advocacy groups in Southeast Asia that will be the catalyst to drive health equity for rare disease communities in the region.
In Southeast Asia, an estimated 45 million people, approximately nine per cent of the region's population, suffer from rare diseases.
“In Malaysia, based on the findings of a recent study conducted by the School of Pharmaceutical Sciences, Universiti Sains Malaysia and University Malaya Medical Centre, only 60 per cent of rare disease patients are receiving treatment,” said Dr Tae Sok Kun, Head of Genetics and Metabolism Unit, Department of Paediatrics, University Malaya.
"For those rare disease patients who are diagnosed, funding for treatment remains a main obstacle as the payment of treatments is contingent on charities, public and industrial subsidy or out-of-pocket payments by patients."
The Rare Disease Summit highlighted the necessity for different stakeholders to come together to discuss tangible steps that can ensure rare disease communities in Southeast Asia can enjoy equitable and sustainable access to medicines.
"No single company or organisation can do this alone. It is important for all of us in the society to create opportunities to broaden access to medicines for rare diseases patients to ensure that no one is left behind in Malaysia,” added Dr Tae.
— Bernama
