The recent South-East Asia Regional Forum on Public Health Emergencies, hosted by Monash University Malaysia, gathered ASEAN and international speakers to discuss pandemic preparedness, health security, and system resilience.
While the forum explored lessons from Covid-19 and strategies for future health emergencies, one major gap stood out—the absence of rare diseases in the regional and national public health narrative.
Public health emergencies affect everyone, but they expose system blind spots most severely among small or vulnerable populations. For people living with rare diseases, every day can feel like a health emergency — marked by uncertainty, limited access to treatment, and little policy attention.
This is why, as Malaysia moves forward with its pre-launch implementation of the National Rare Disease Policy, it must ensure that rare diseases are embedded firmly within the public health agenda.
The Blind Spot In Public Health
Public health should be preventive and equitable, yet its priorities often follow scale. Common diseases receive surveillance and budgets, while rare diseases remain invisible.
Globally, rare diseases affect about 3.5 to 6 per cent of the population. In Malaysia, hospital studies have recorded just over a thousand diagnosed patients, but without a national registry, the real figure is unknown. NGOs estimate it could reach tens or even hundreds of thousands once data is properly captured.
This data gap has far-reaching implications. Without population-level surveillance, Malaysia risks underestimating both the burden and the opportunity for earlier intervention.
Once a national registry is established, the numbers will likely reveal that rare diseases are not “rare” at all, but a significant and underserved public health concern.
For too long, rare diseases have been treated as isolated, specialist issues. In truth, they are population-health challenges that overlap with maternal and child health, disability, mental well-being, and lifelong care. Their continued exclusion from public health planning weakens system preparedness and equity for all.
Public Health Trauma Beyond Pandemics
A recurring theme at the forum was mental health, particularly the PTSD and burnout faced by health care workers during the Covid-19 pandemic. Yet, a similar form of trauma persists in families managing lifelong, complex diseases.
During the pandemic, many rare-disease families lost access to clinics, wound-care supplies, and rehabilitation support. The emotional toll mirrored the exhaustion of front-line workers.
If Malaysia’s goal is to strengthen resilience, it must include psychological resilience for patients and caregivers living with chronic uncertainty.
Mental health and counselling support must therefore be woven into the rare disease care framework, not treated as an afterthought. Resilient systems begin with resilient communities.
A Call For Partnership, Not Paternalism
Throughout the forum, speakers underscored the importance of collaboration across governments, academia, civil society, and industry — with several sessions also recognising civil society and communities as key stakeholders in preparedness and response.
Yet in practice, patient organisations are still rarely positioned as equal partners. They are often invited to participate, but seldom empowered to co-design solutions or shape policies that directly affect them.
In Malaysia, patient advocacy remains an actor on the stage, but not yet part of the production. With the right platform, such as the Rare Diseases Coalition Malaysia, we are ready to move from participation to partnership.
Financing, Innovation, And Inclusion
Financing was another key issue raised during the forum, and it applies equally to rare diseases.
Many Malaysian NGOs still lack tax-exempt status, limiting their ability to access grants or build long-term programmes. Innovative mechanisms such as Social Impact Bonds or Health Impact Funds could align investment with measurable health outcomes.
However, the path to funding and project implementation is often slowed by layers of bureaucracy. The popular tagline “no one left behind” loses its meaning when rare-disease communities in Malaysia are, in reality, the ones most left behind.
In public health, whatever we do should benefit everyone, not only a specific group, disease, or community. The measure of a strong system is not in numbers, but in how it protects those who are least visible.
Tax incentives and public-private collaborations can help sustain programmes like caregiver training, wound-care support, and early-screening awareness. These are not acts of charity; they are strategic investments in system resilience and social equity.
Why Rare Diseases Belong In Public Health
Rare diseases belong within the public health framework not because of how many are affected, but because of who is being left behind.
Public health is about prevention, early detection, and protection — and these are exactly the foundations that rare diseases require. Integrating rare diseases into public health ensures that Malaysia’s system truly upholds equity, preparedness, and the principle that no one is left behind.
Pre-Launch: The Moment That Matters Most
Malaysia’s Rare Disease Policy has been launched, but remains in a pre-launch implementation phase, before full operationalisation. This period is critical: it will determine whether the policy becomes actionable or remains aspirational.
The Public Health Division must now play a visible leadership role – integrating rare diseases into preventive programmes, surveillance systems, and cross-sector coordination.
Collaborations with hospitals, universities, and patient-led organisations will ensure that the policy reflects lived realities and measurable outcomes.
As one Asean speaker reminded participants, when a policy becomes a national announcement, its monitoring mechanisms must already be in place. Launching a policy is not the end — it marks the beginning of responsibility.
Toward An Asean Public Health Agenda For Rare Diseases
Across Asean, countries are moving toward inclusion, each in their own way. If Malaysia fully implements its Rare Disease Policy, it can become a regional model for integrating rare diseases into public health systems, in line with World Health Organization (WHO) and Asean principles on health equity and system resilience.
The regional forum also showcased promising capacity-building models, from strengthening laboratory networks and emergency preparedness to data-driven health security.
Malaysia can adapt similar approaches for rare-disease education, training, and community-based care, ensuring that knowledge flows from specialists to the front lines.
By embedding rare diseases into broader public health capacity-building, Malaysia can enhance preparedness, equity, and sustainability, without leaving any community behind.
When the most vulnerable are visible, the entire health system becomes stronger.
Closing Reflection
Public health begins where vulnerability lives. The Covid-19 pandemic and its aftermath – from long-term trauma to system fatigue – revealed how fragile even strong institutions can be.
As Malaysia transitions from the pre-launch phase to full implementation of its Rare Disease Policy, the Ministry of Health (MOH) — through its Public Health Division, the Director-General, and the minister’s office — has a unique opportunity to lead by example.
This is the moment that matters most. Rare diseases must be placed at the heart of Malaysia’s public health agenda. before the policy takes its final shape.
Saida Abu Bakar is president of the Dystrophic Epidermolysis Bullosa Research Association Malaysia (DEBRA Malaysia), a patient support group of individuals and families affected by the rare skin disease Epidermolysis Bullosa (EB) and interim committee member of the Rare Diseases Coalition Malaysia (RDCM).
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
