RDI IS A STRONG VOICE FOR PERSONS LIVING WITH A RARE DISEASE AND THEIR FAMILIES AROUND THE WORLD.
our priorities
Become a member
RDI EVENTS
Formal Side Event to the High Level Meeting on Universal Health Coverage 2023 – New York City/Hybrid
RDI Membership Event – 30 October – 2 November 2023 – Barcelona, Spain
PAST EVENTS
UHC Day 2022 – Universal Health Coverage for Rare Diseases (HLPF) , 12 December 2022, Online
Formal Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) , 6 July 2022, Online
Rare Diseases International’s Informal Side-Event to the 75th World Health Assembly , 24 May 2022, Geneva
Rare Disease Day 2022 Event , 28 February 2022, Dubai
global EVENTS
milestones
RARE DISEASES INTERNATIONAL
FIRST UN POLICY EVENT
UHC INCLUDES RARE DISEASES
AGREEMENT WITH WHO
UN RESOLUTION
GLOBAL ADVOCACY CAMPAIGN
RARE DISEASES INTERNATIONAL
2015
RDI is initiated by EURORDIS and Rare Disease National Alliances for the USA, Canada, Japan, Australia and Russia.
Read More
FIRST UN POLICY EVENT
2019
RDI co-hosts the first Rare Disease Day Policy Event at the United Nations.
Read More
UHC INCLUDES RARE DISEASES
2019
Rare Diseases are included in the UN Political Declaration on Universal Health Coverage
Read More
AGREEMENT WITH WHO
2019
WHO and RDI sign a Memorandum of Understanding for future collaboration
Read More
UN RESOLUTION
2021
The UN adopts the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”
Read More
GLOBAL ADVOCACY CAMPAIGN
2021
Families and rare diseases organisations around the world lead a global advocacy campaign calling for the adoption of a Un Resolution in 2021
Advocacy Toolkit
SOCIAL MEDIA
toolkits & Resources
Toolkit on the UN Resolution on Persons Living with a Rare DIsease
Toolkit on Universal Health Coverage for Persons Living with a Rare Disease
articles & papers
global network expert series
Follow #GN4RARE on RDI social media to read monthly discussions with the Panel of Experts, the diverse multistakeholder group supporting the development of the Global Network for Rare Diseases
RARE DISEASES INTERNATIONAL 
FIRST UN POLICY EVENT 
UHC INCLUDES RARE DISEASES 
AGREEMENT WITH WHO 
UN RESOLUTION 
GLOBAL ADVOCACY CAMPAIGN 
