Download the Agenda and Concept Note

“Why Invest in Rare Diseases? Ensuring Universal Health Coverage for Persons Living with a Rare Disease”, was an in-person event co-hosted by FranceMalaysia, Egypt and Ghana held at the Restaurant Vieux Bois (Av. de la Paix 12, Geneva) on Wednesday, May 29, 2024 at 18:00 CEST. 

Key stakeholders, thought leaders, and advocates shared insights on the importance of investing in rare diseases to ensure greater equity for all Persons Living with a Rare Disease (PLWRD) and make Universal Health Coverage (UHC) a reality.

Event highlights:

Our opening message from Persons Living with a Rare Disease around the world:

Alexandra Heumber Perry

Alexandra Heumber Perry
CEO, Rare Diseases International

Durhane Wong-Rieger
Canadian Organization for Rare Disorders
Chair of RDI Council

Dr Ruediger Krech
Director of Health Promotion
World Health Organization

Datuk Dr Muhammad Radzi Abu Hassan
Director General of Health, Malaysia

Antoine Saint-Denis
Director of European and International Affairs
French Ministry for Labour, Health and Solidarities

Dr Mohamed Hassany
Assistant Minister for Public Health Initiatives, Egypt

Dr Hafez Adam Taher
Director, External Health Cooperation
Ministry of Health, Ghana

Anne-Sophie Chalandon
IFPMA Rare Diseases Working Group

Antoine Gliksohn
Global Albinism Alliance

Dr. Androulla Eleftheriou
Thalassaemia International Federation

Dr Roberto Giugliani
Casa Hunter

Trudy Nyakambangwe
Child and Youth Care, Zimbabwe

Nadiah Hanim Abdul Latif
Malaysian Rare Disorders Society

Yann Le Cam
EURORDIS – Rare Diseases Europe

Juan Carrión