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 France, Malaysia, 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:
Event Speakers:
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
FEDER/ALIBER