Bridging global disparities
I lead a project exploring the ethical dimensions of rare inherited disease research priority-setting in LMICs, with empirical work focused on Malaysia.
Whose research needs
get priority?
Rare disease research prioritization asks how limited research resources can respond fairly to diverse and often overlooked needs.
Evidence gaps have consequences
For people with rare diseases, gaps in knowledge can limit diagnosis, treatment, service planning, and policy. Deciding what research to prioritise therefore involves both scientific judgement and questions of fairness.
My work examines how priority-setting can take account of neglected populations, stakeholder perspectives, and the realities of low- and middle-income settings.
Connecting ethical inquiry with policy
Malaysia’s health research priorities
As Rare Disease Advisor and a Technical Working Group member for the 13th Malaysia Plan Health Research Priorities 2026–2030, I led discussions involving clinician-researchers, patient advocates, and policymakers. This work contributed to the explicit inclusion of rare diseases in Malaysia’s national health research priorities.
The duty to generate evidence
My developing scholarship considers whether evidence gaps should be understood as an ethical and policy concern, and how responsibilities for addressing them should be shared.
IRDiRC Interdisciplinary Scientific Committee
Member, September 2026–September 2029. This role complements my work connecting rare disease evidence, ethics, and research priorities.
Fairness in Rare Disease Research
A video from my channel to accompany the questions explored here.
Watch the featured videos ↗Questions worth working on together
- How can patient and community perspectives meaningfully shape research priorities?
- How should fairness, feasibility, and unmet need be considered together?
- What institutional arrangements support sustained evidence generation?
I welcome perspectives from bioethics, health economics, social science, evidence synthesis, health policy, and patient organisations.
LET’S CONNECT
Start a conversation ↗Help shape fairer research priorities.
I welcome complementary perspectives and collaborations across research, policy, practice, and communities.