In-person side event during the 78th World Health Assembly

Expanding access to affordable treatments for rare diseases

Date: Wednesday, 21 May 2025

Time: 1 pm - 2:30 pm

Venue: Médecins Sans Frontières Office - Rte de Ferney 140, Geneva

Bus 60 or 8 from Appia bus station to Grand-Saconnex-Morillons stop

A light sandwich lunch will be offered from 12:30 pm 

Register

Rare diseases affect over 350 million people worldwide—nearly half of them children—yet 95% of these conditions have no approved treatments. Existing therapies are often priced out of reach, driven by high-cost, low-volume R&D models and limited access in low- and middle-income countries.

A resolution on rare diseases, led by Egypt and Spain, is expected to be adopted at the 78th World Health Assembly. While this marks an important milestone, it is only the beginning. The resolution does not address intellectual property barriers, making its implementation and follow-up action critical to improving affordability and access.

This conversation will explore the economics of orphan drug development, the likely impact of the WHA resolution, and complementary pathways for global and national action to ensure patients are not left behind.

Panel

Speakers

Prof. Mohamed Hassany, Egypt's Assistant Minister of Health for Projects and Public Health Initiatives to be confirmed

Pedro Gullón, Director General of Public Health and Health Equity from the Spanish Ministry of Health

Chetali Rao, Senior Researcher at Third World Network

Discussants

Adrián Alonso, Research and Advocacy Manager at Salud por Derecho

Diarmaid McDonald, Director of Just Treatment

James Love, Director of Knowledge Ecology International

Moderators

Priti Patnaik, Founding Editor of Geneva Health Files

K.M. Gopakumar, Senior Researcher at Third World Network