PUTRAJAYA: Health Minister Datuk Seri Dr Dzulkefly Ahmad has announced Malaysia’s first National Policy for Rare Diseases as a national commitment to ensure proper care for affected Malaysians.
The policy pre-launched on August 27 represents a historic milestone in addressing long-standing gaps in diagnosis, treatment and support for individuals with rare conditions.
Rare diseases affect fewer than one in 4,000 people yet the journey to diagnosis and care often proves long, uncertain and lonely for patients and families.
Globally up to 8,000 rare conditions exist but only a small fraction currently have approved treatments available to patients.
The minister emphasized that beyond every statistic lies a story of courage involving children, parents and families facing these challenging conditions.
He stated that this policy represents the government’s promise that these patients matter and will not be forgotten within the healthcare system.
The policy aims to create an inclusive, equitable and compassionate healthcare system where no Malaysians are left behind due to their rare medical condition.
Structured around five key pillars, the policy seeks to reduce diagnostic delays and bring families closer to answers while ensuring comprehensive patient support.
The five pillars include early detection initiatives and fairer access to treatment options for all rare disease patients nationwide.
Additional pillars focus on strengthening research and innovation while developing clinical expertise specifically for rare disease management.
The policy will also establish a national rare disease database to improve understanding and coordination of care across Malaysia.
According to the World Health Organisation, rare diseases affect a small portion of the population and are usually debilitating in nature.
These conditions often prove chronic, serious and potentially life-threatening for those affected by them.
An estimated 6,000 to 8,000 rare diseases exist worldwide with the majority caused by genetic factors rather than environmental influences. – Bernama
