RDI 6th Annual Meeting – ONLINE

RDI logo and laptop

The RDI Annual Meeting is an exceptional forum for patient advocates and other stakeholders to hear about the latest actions putting rare diseases on the global health agenda and understand how they too can get involved.

To protect the health and safety of everyone involved and to support efforts to curb the propagation of COVID-19, the 6th RDI meeting previously planned to take place in Geneva in May, will be hosted completely online.

You are invited to a web event that will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions. 

Two events make up the RDI 6th Annual Meeting programme: the General Assembly and Membership Meeting open only to RDI Members will take place on 18 May 2020, and on 19 May 2020, the RDI Global Meeting is open to anyone interested in the international rare disease movement.

You can register for each meeting right here.

Online Programme

Day 1 – Monday, 18 May, 2020  (14.00 – 16.00 CET)

General Assembly and Membership Meeting (all RDI Members)

Part 1 : RDI General Assembly
14.00 – 15.30 CET

Part 2: RDI Membership Meeting
15.25 – 16.00 CET
Interactive session with RDI Membership

Day 2 – Tuesday, 19 May, 2020 ( 14.00 – 17.00 CET)

RDI Global Meeting (Open to all rare disease stakeholders)

The Global Meeting is open to RDI Members, national authorities and UN Permanent Mission representatives, health NGOs, RDI Alliance of Companies and other industry representatives, as well as all other health stakeholders and patient groups.


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

  • Optional Session:

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

17.00-17.45 Panel discussion followed by open session for participants to share and learn from each other

-Samuel Agyei Wiafe, Founder, Rare Disease Ghana Initiative
-Jesus Navarro, Vice President, Iberoamerican Alliance for Rare Diseases (ALIBER)
-Kelly du Plessis, CEO, Rare Diseases South Africa
-Lisa Sarfaty, Director of Strategic Planning and Project Development,
National Organization for Rare Disorders, (NORD) USA
-Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders (CORD)