The World Health Assembly (WHA) is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The Health Assembly is held annually in Geneva, Switzerland.
Civil society participation is an important part of WHA. RDI brings the voice of people living with a rare disease to this annual meeting via one-to-one meetings with Member State representatives, official statements and the organisation of side-events.
Rare diseases are at the forefront of digital health and exemplify the high added value of regional and global approaches. New digital tools are already being used to connect highly isolated patients, speed up diagnosis, refer to specialized medical expertise, gather and share expertise on highly complex care and accelerate clinical research.
Rare Diseases International, in collaboration with the NGO Committee for Rare Diseases, hosted an informal side event open to all attendees of the WHA to present RDI’s position on Universal Health Coverage (UHC). 65 patient advocates and rare disease stakeholders attended the event.
Paloma Tejada, RDI Director, delivered an oral Statement on Rare Diseases at the 71st World Health Assembly (23 May, 2018), submitted with Thalassaemia International Federation, World Federation of Hemophilia, International Alliance of Patients’ Organisations and March of Dimes. Read the article and watch the video.