Ravi Ram | CEO
Rare Diseases International
Dr. Ravi M. Ram is a public health leader and CEO of Rare Diseases International (RDI). He brings a focus on social participation and bridging conversations among patients and people with lived experience with policymakers and health experts. Based in Nairobi, Kenya, and Toulouse, France, Ravi has substantial experience in gender and equity-focused approaches to improving health and well-being, through direct engagements with communities, civil society organizations, academia, industry, governments and wider stakeholders. His experience in health systems spans Africa, South & Southeast Asia and the Pacific regions. As part of his professional service, Ravi serves on the boards and steering committees of the WHO Civil Society Commission, the Patient Movement Catalyst, Health Poverty Action and the African Gender & Development Evaluators Network. He actively contributes to a range of health-related civil society coalitions and social movements.
Appearances:
Day 1 @ 14:40
Panel: The Economic impact of living with a rare disease in APAC and LATAM – Regional solutions to inform a Global Action Plan
Day 2 @ 15:00
Closing Keynote Panel: Pushing Boundaries for the future – What’s next for Rare?
- Assessing a policy roadmap towards an EU and Global Action Plan for Rare Diseases (GAPRD)
- How will the WHO UN Resolution impact rare diseases in 2026 and what progress has been made?
-How can regions come together to harmonise, collaborate and put patients’ needs at the forefront of decision making?
-Beyond the WHO Resolution on rare diseases, how important are the other WHO resolutions and UN Resolutions which are relevant to rare diseases?
-Where are we in the process towards a WHO Global Action Plan on Rare Diseases impact awareness, policy and planning of services at the regional and national levels?
-Is the European Union aligned for a European Action Plan for Rare Diseases? Where are we in the process and what can be expected next?
While Europe is losing ground in rare diseases clinical trials and marketing approval, and is under the high pressure of the US Administration’s Most Favored Nation strategy, how the stakeholders community of rare diseases can play the EU agenda for competitiveness and attractiveness and come with game changing initiatives?
How can we bring the European Reference Networks and clinical research closer to support innovative and meaningful therapy development, and improve patients access?
Which boundaries can be pushed from the recently adopted legislations; i.e EU Pharma Legislation, HTA Legislation & Critical Medicines Act
What comes next in the legislative agenda and which boundaries push can we expect? Biotech Act? Clinical Trial Regulation? Cross Border Health Care?
How can Europe play a different society choice giving priority to collaboration – researchers, clinicians, member states, public-private partnership- and put patients’ needs and solidarity at the forefront of decision making?
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