Formal Side-Event to the High-Level Meeting on Universal Health Coverage (UHC), 2023

A Blueprint for Leaving No One Behind, Thursday 21 September 2023 13:15-14:30 EST

RDI, the Permanent Mission of Spain to the United Nations, and the Permanent Mission of Sweden to the United Nations are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, 2023, from 13:15 to 14:30 EST. The event is co-organized with the NGO Committee for Rare Diseases, EURORDIS-Rare Diseases Europe, Federación Española de Enfermedades Raras (FEDER), and Agrenska Foundation.

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, panelists, and an audience formed of civil society, academia, research and health institutions, government ministries, regional and international organizations, and the private sector.

Find out more about UHC for PLWRD. Our UHC Factsheet is available in English, Spanish, French, Arabic and Chinese.

You can read the UN’s Political Declaration on UHC here. (Rare diseases are mentioned in paragraph 55.)


21 September, 2023 | Hybrid
UN Headquarters, Conference Room 7
405 E. 45th St
New York, NY 10017 USA


Her Majesty The Queen Silvia of Sweden
(via video statement)

Her Majesty The Queen Letizia of Spain
(via video statement)

His Excellency José Manuel Miñones Conde
Minister of Public Health, Spain
(via video statement)

portrait of Acko Ankarberg Johansson

Her Excellency Mrs Acko Ankarberg Johansson
Minister of Public Health Care, Sweden

Her Excellency Dr Hanan Mohammed Al-Kuwari
Minister of Public Health, State of Qatar

portrait of Aurélien Rousseau

His Excellency Aurélien Rousseau
Minister of Public Health and Prevention, France

Her Excellency Dr Zaliha Mustafa
Minister of Health, Malaysia

Her Excellency Dr Theresa Tam
Chief Public Health Officer, Canada

Her Excellency Dr Maha Barakat
Assistant Minister for Medical Affairs and Life Sciences, Ministry of Foreign Affairs, United Arab Emirates

His Excellency Dr Carlos Augusto Grabois Gadelha
Secretary of Science, Technology, Innovation and Strategic Health Inputs, Ministry of Health, Brazil

Dr Jérôme Salomon
Assistant Director-General, Universal Health Coverage, Communicable and Noncommunicable Diseases, World Health Organization

photo of Sandra Gallina

Sandra Gallina
Director-General for Health and Food Safety, European Commission

Dr Sarah Alkenbrack
Senior Health Economist, Health Nutrition and Population Global Practice, World Bank Group

Anders Olauson
Chairman, NGO Committee for Rare Diseases and Agrenska Foundation

Liberato C. Bautista
President, The Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)

Juan Carrión Tudela
President, Federación Española de Enfermedades Raras (FEDER) and Alianza Iberoamericana de Enfermedades Raras (ALIBER)

Todd Howland
Chief, Development and Economic and Social Rights Branch, Office of the United Nations High Commissioner for Human Rights (OHCHR)

Durhane Wong-Rieger
CEO, Canadian Organization for Rare Disorders (CORD)
Chair, RDI Council

portrait of Yann Le Cam

Yann Le Cam
Chief Executive Officer and Co-Founder, EURORDIS – Rare Diseases Europe
Treasurer, Co-Founder & Chair of the Policy Committee, RDI
Founding member and Vice-Chair, NGO Committee for Rare Diseases

Alexandra Heumber Perry
Chief Executive Officer, RDI


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
Co-Founder, Rare Disorders Kenya

Vlasta Zmazek
President, DEBRA Croatia