TEGUH HARYO SASONGKO · VIDEO
Rare Diseases: The Invisible Millions
Connect this conversation with my work on overlooked health needs.
RESEARCH · ETHICS · COLLABORATIONConnecting disciplines.
Connecting disciplines.
Advancing equitable
health.
I’m Teguh Haryo Sasongko. I bring researchers, policymakers, industry, and patient communities together around overlooked health needs—connecting rare disease knowledge, ethics, and evidence with decisions that matter.
Deputy Director · IRDI
Kuala Lumpur, Malaysia
Comment accepted in Nature Climate Change.
My Comment, “Rare diseases are an overlooked dimension in climate-health adaptation”, has been accepted in Nature Climate Change.
Explore my research programme ↗RESEARCH IN FOCUSDifferent questions.
Different questions.
A shared concern for equity.
My current work explores whose needs shape research—and whose needs health systems must learn to see.
01 / EVIDENCE & EQUITYWhose research needs
Rare diseases in
Whose research needs
get priority?
Ethical priority-setting for rare diseases, with particular attention to low- and middle-income settings.
Explore the research ↗02 / CLIMATE & HEALTHRare diseases in
a changing climate
Developing research at the intersection of rare diseases, climate–health, and equity.
Explore the research ↗WATCH & EXPLORERare diseases.
Rare diseases.
A wider conversation.
Two videos from my channel, alongside the research questions that guide my work.
TEGUH HARYO SASONGKO · VIDEO
Fairness in Rare Disease Research
Explore the question of fairness alongside my research on ethical priority-setting.
From understanding disease
to shaping how we respond.
My path has taken me from molecular studies of rare inherited disorders to evidence synthesis, ethical research priorities, and health policy. The connecting question is how knowledge can better serve people.
Explore my academic journey ↗BEYOND THE RESEARCH
Explore my wider work ↗Evidence put to work.
Accessible evidence
Leading Cochrane Malaysia’s Bahasa Malaysia Translation Project to bring research evidence to a wider public.
Policy & priorities
Contributing to Malaysia’s rare disease health research priorities and international discussions on research ethics.
Responsible innovation
Supporting consultancy, laboratory services, business development, and research translation through IRDI.
MY INSTITUTIONAL HOMEResearch.
IMU University / IRDI
Institute for Research, Development, and Innovation
Research.
Partnership.
Impact.
Connecting academic expertise
with real-world needs.
As Associate Professor of Physiology at IMU University and Deputy Director for Consultancy, Laboratory Services, and Business Development at IRDI, I connect research expertise with opportunities for collaboration and responsible innovation.
ConsultancyLaboratory servicesContract researchResearch translation
For industry and public-sector partners, our conversation can begin with a practical question: what evidence, expertise, or research partnership would help you move forward?
WORK WITH MEDifferent expertise.
Different expertise.
A question we can share.
Bring a research question, a policy challenge, or an innovation that needs evidence.
Build the next study
Combine climate science, rare disease research, social science, health economics, and evidence synthesis in joint studies and grant proposals.
Explore a research collaboration ↗Make priorities actionable
Connect evidence reviews and stakeholder perspectives with fair research priorities, genomic governance, and inclusive adaptation planning.
Discuss a policy question ↗Connect innovation with need
Explore evidence generation, research partnerships, and responsible translation in diagnostics, biotechnology, and health technology.
Discuss an industry partnership ↗Patient organisations and communities are welcome as research partners, bringing lived experience into the questions, methods, and outcomes.
LET’S CONNECT
Start a conversation ↗Good work begins with a conversation.
I welcome complementary perspectives and collaborations across research, policy, practice, and communities.