New York: In a momentous gathering at the 78th UN General Assembly Summit in New York on September 21, 2023, Mr Ramaiah Muthyala, President and CEO of IORD, took part in the prestigious formal Side-Event dedicated to the UN High-Level Meeting on Universal Health Coverage for Rare Diseases.
The event, titled “Universal Health Coverage (UHC) a Reality for People Living with Rare Diseases,” was organized by Rare Disease International (RDI) in collaboration with the Permanent Mission of Spain and Sweden to the United Nations in New York, the Ministry of Public Health – Qatar, EURORDIS, Ågrenska and the NGO Committee for Rare Diseases, along with the UN Member States.
The formal side event featured impassioned and informative speeches from Her Majesty Queen Letizia of Spain, Her Majesty Queen Silvia of Sweden, the Health Minister from Qatar, the Assistant Director-General of the World Health Organization, a Senior Economist from the World Bank, and many others.
Notable attendees included RDI Chair Durhane Wong-Rieger, Founder, Treasurer & Policy Committee Chair Yann Le Cam, and CEO Alexandra Heumber Perry.
This event marks the continuation of years-long advocacy by RDI and its partners. Since the Political Declaration on UHC in 2019, which specifically mentions rare diseases, and the milestone UN Resolution on “Addressing the challenges of persons living with a rare disease and their families,” RDI has solidified the critical tenets of UHC for Rare Diseases through regional consultations.
By examining the three pillars of UHC—population, services, and financial protection—and applying them to rare diseases, this event aims to establish 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, panelists, and an audience comprising civil society, academia, research and health institutions, government ministries, regional and international organizations, and the private sector.
