RDI Global Meeting 2020

The RDI Global Meeting brought together over 180 stakeholders from 48 countries including patient organisations, industry, academia, research, government as well as philanthropic organisations to hear about the actions putting rare diseases on the global agenda and opportunities for collaboration.


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)