RDI 6th Annual Meeting – ONLINE


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.  

Moving the programme online offers an opportunity for a greater number of our members to participate in the General Assembly and for all stakeholders involved in rare disease to take part in the RDI Global Meeting. 

Online Programme

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

General Assembly and Membership Meeting (all RDI Members) 

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

RDI Global Meeting (Open to all rare disease stakeholders)

Leveraging Universal Health Coverage to advance rare disease policy:

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

• Advocating for the integration of rare diseases in national policies and
regional UHC policies 

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

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

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

• WHO Essential Medicines List and WHO Essential in Vitro Diagnostics List 

RDI Global Meeting. Register HERE!