About the Event
This side event builds on the landmark WHA Resolution “Rare Diseases: a global health priority for equity and inclusion” adopted at the 78th WHA, which recognized rare diseases as a global health priority, and called for the development of a 10-Year Global Action Plan on Rare Diseases (GAPRD). As we move toward implementation of these commitments, it is important to reflect on the transversality of rare diseases and the importance of developing people-centered health systems.
Rare diseases expose the stress points of health systems: delayed diagnosis, fragmented care, unaffordable innovation, weak data, and inequitable access. When health systems are designed to meet the needs of people living with rare diseases (PLWRD), they must become more precise, more integrated, more person-centred, and more equitable.
This side-event positions rare diseases not as a niche issue, but as a test case and accelerator for Universal Health Coverage (UHC) and broader global health priorities. The central message is simple and powerful: Health systems that can deliver for rare diseases are health systems that can deliver for everyone.
Download the Agenda and Concept Note
Register to attend the in-person event in Geneva
featured speakers:
H.E. Prof. Khaled Abdel-Ghaffar
Minister of Health and Population
The Arab Republic of Egypt
Dr Javier Padilla Bernáldez
Secretary of State, Ministry of Health
Kingdom of Spain
Dr Jérôme Weinbach
Deputy director, European and International Affairs, Secretariat general – DAEI (Paris)
French social ministries
Dr. Adiratna binti Mat Ripen
Head of the Cancer Research Centre, Institute of Medical Research
National Institutes of Health, Malaysia
Dr Ruediger Krech
Director, Environment, Climate Change and Migration a.i.
Division of Health Promotion, Disease Prevention and Care
World Health Organization
Claude Meyer
Senior Adviser, P4H Network
Department of (Health Systems) Performance, Financing, and Delivery (PFD)
World Health Organization
Dr Kirsten Johnson
Chair, RDI Council of Directors
President, Fragile X International
Ritu Jain
Secretary, RDI Council of Directors
President, Debra International
Diego Gil Cardozo
RDI Council of Directors
President, ERCAL
Flaminia Macchia
Interim Executive Director
Rare Diseases International
Alanna Miller
Global Policy Lead
Rare Diseases International
Kin-Ping Tsang
Co-Founder
Hong Kong Rare Disease Collaborative Network
Anne-Sophie Chalandon
Co-Chair of the ICG RD
IFPMA
Ghada Mounib
Founder & Head of Board of Trustees
Forset Hayah Foundation for Rare Diseases
Toni Roberts
RDI Youth Leadership Programme
Secretary, Debra International Youth Council