Networking Experts, Centres of Expertise and Patient Organizations to Strengthen Health Systems for Rare Diseases

This informal side-event to the World Health Assembly aims to explore how national healthcare systems can be strengthened to better support PLWRD and help achieve existing international commitments. Participants will discuss how networking experts, centers of expertise, and patient organizations can help foster national and global “health systems strengthening”.

The event will present proposals for strengthening healthcare systems for PLWRD, with an in-depth look at the creation of a Global Rare Diseases Network. The event will start by sharing an operational description of rare diseases, followed by presenting and discussing five proposals on global networking to strengthen health systems. Finally, a panel of experts will detail, from different perspectives, the added-value of networking care globally, to establish a bottom-up approach in strengthening healthcare systems for rare diseases.