RDI Global Meeting 2020

The RDI Global Meeting is part of the RDI Annual Meeting calendar of events. Over 180 stakeholders from 48 countries including patient organisations, industry, academia, research, government as well as philanthropic organisations joined the call to hear about the actions putting rare diseases on the global health agenda and how they too can get involved in RDI’s work at the political and operational level.

On 19 May 2020, the 4-hour webinar began with a presentation describing the journey to include rare diseases in the UN Political Declaration on Universal Health Coverage, followed by a case study from Spain on inclusion of rare diseases in UHC policies and implementation at the national level.

The final conversation focused on the importance of this milestone for the rare disease community and how to move forward in the midst of the COVID-19 pandemic. Leaders of the patient community in Ghana, South Africa, Latin America, the USA and Canada, described the impact of the pandemic on rare disease patients in their part of the world, as well as their response to the crisis in the form of surveys, positions papers, statements and guidelines.

Dr Rudiger Krech, Director of UHC and Healthier Populations, who joined the meeting from the 73rd session of the World Health Assembly, said that PLWRD belong to vulnerable populations at higher risk of being overlooked when seeking care, and therefore need to speak up.

Full Agenda


Participant List


Participant Breakdown



Watch the Global Meeting 2020



Meeting Presentations


Leveraging Universal Health Coverage to advance rare disease policy:

Celebrating the inclusion of rare diseases in landmark United Nations
Political Declaration on UHC

Durhane Wong-Rieger, RDI Chair

Advocating for the integration of rare diseases in national policies within the framework of UHC

Alba Ancochea, FEDER – Federacion Española de Enfermedades Raras

Global collaborations to achieve Universal Health Coverage:

•Memorandum of Understanding (MoU) between RDI and the World Health


Towards a Collaborative Global Network of Centres of Excellence for Rare
Diseases:  Needs Assessment and Concept development

Matt Bolz Johnson, Advisor CGN4RD

Towards an international framework for an operational description of rare diseases and key prevalence and incidence figures

Ana Rath, Orphanet

Working with WHO to improve access to rare disease medicinal products:

WHO Essential Medicines List and WHO Essential in Vitro Diagnostics List: Why, What & How


Case study of a patient group that has a diagnostic included in a WHO Priority List

Johan Prévot, IPOPI – International Patient Organisation for Primary Immunodeficiencies

Open Session: COVID-19 Global Health Crisis: Responses from the rare disease patient community

Iberoamerican Alliance for Rare Diseases (ALIBER)

National Organization for Rare Disorders (NORD)

Canadian Organization for Rare Disorders (CORD)