On Thursday, 21 September, 2023, RDI held a hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” in partnership with the Permanent Mission of Spain to the United Nations, and the Permanent Mission of Sweden to the United Nations, the NGO Committee for Rare Diseases, EURORDIS-Rare Diseases Europe, Federación Española de Enfermedades Raras (FEDER), and Agrenska Foundation.
“Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” was formally opened by welcome messages by Her Majesty the Queen Letizia of Spain, Her Majesty the Queen Silvia of Sweden and a video keynote address by Dr. José Manuel Muñones Conde, Minister of Health of Spain. This was followed by keynote address by Acko Ankarberg Johansson, Minister for Health Care, Sweden, Dr Hanan Mohammed Al-Kuwari, Minister of Public Health, State of Qatar and Dr Jérôme Salomon, Assistant Director-General, Universal Health Coverage, Communicable and Noncommunicable Diseases, of the World Health Organization.
One hundred people attended the event in-person, with an additional 600 registered attendees streaming the event on UN Web TV.
This event was 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 solidified the next steps in implementing UHC for Rare Diseases.
You can read the UN’s Political Declaration on UHC here. (Rare diseases are mentioned in paragraph 55.)