PUTRAJAYA: The launch of the country’s first-ever National Policy for Rare Diseases represents a national commitment to ensure that Malaysians with rare diseases receive attention and care, says Datuk Seri Dr Dzulkefly Ahmad (pic).
The Health Minister said the pre-launch on Aug 27 marked a historic milestone for Malaysia, aimed at addressing longstanding gaps in the diagnosis, treatment and support for individuals affected by rare conditions.
“Rare diseases affect fewer than one in 4,000 people, yet the journey to diagnosis and care is often long, uncertain and lonely.
“Globally, there are up to 8,000 rare conditions but only a small fraction have approved treatments. This is why we must act,” he told Bernama.
Structured around five key pillars, Dzulkefly said the policy seeks to reduce the diagnostic odyssey and bring families closer to answers while ensuring no patients are left behind.
“Beyond every statistics is a story of courage, a child, a parent and a family.
“To them, I say this policy is our promise. You matter and you will not be forgotten.
“Together, we can create a healthcare system that is inclusive, equitable and compassionate where no Malaysians are left behind because their condition is rare,” he said.
The five key pillars are early detection, fairer access to treatment, stronger research and innovation, development of clinical expertise and establishing a national rare disease database.
According to the World Health Organisation, rare diseases are defined as diseases that affect a small portion of the general population and are usually debilitating in nature.
These diseases are often chronic, serious and can be life-threatening.
It is estimated that there are between 6,000 and 8,000 rare diseases worldwide with the majority of them being caused by genetic factors.
