This event is the continuation of years-long advocacy by RDI and its partners. Since the Political Declaration on UHC in 2019, in which rare diseases are specifically mentioned, and the milestone UN Resolution on "Addressing the challenges of persons living with a rare disease and their families", RDI has solidified the key tenets of UHC for Rare Diseases through regional consultations.
By looking at the three pillars of UHC in general, namely population, services, and financial protection, and applying them to rare diseases in particular, this event will solidify the next steps in implementing UHC for Rare Diseases. "Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind" will feature expert speakers, panellists, and an audience formed of civil society, academia, research and health institutions, government ministries, regional and international organizations, and the private sector.
The event will include a High-Level segment featuring Ministries of Health and representatives of WHO, World Bank and OHCHR. This will be followed by a Panel Discussion moderated by Dr Durhane Wong-Rieger, Chair of the RDI Council, and with the participation of: Nadiah Hanim Abdul Latif (President, Malaysian Rare Disorders Society); Rachel Yang (China Alliance for Rare Disease); Diego Fernando Gil Cardozo (Executive Director, Federación Colombiana de Enfermedades Raras); Christine Mutena (Rare Disorders Kenya); Vlasta Zmazek (President, DEBRA Croatia)