RDI LAUNCHED
May 1, 2015
RDI is initiated by Rare Disease National Alliances for USA, Canada, Japan, Australia and Russia and EURORDIS – Rare Disease Europe. Read Statutes
Read moreFormal Registration
May 1, 2018
2018, May – RDI becomes an independent organisation with a separate legal identity RDI Statutes
Read moreFirst United Nations Policy Event
January 21, 2019
2019, February – the NGO Committee for Rare Diseases and RDI co-organise policy event at the United Nations
Read moreUHC 2030
September 3, 2019
2019, December – RDI joins the Civil Society Engagement Mechanism of UHC2030
Read moreUN Declaration on UHC includes Rare Diseases
September 23, 2019
2019, September – Joint advocacy from the global rare diseases community results in the inclusion of rare diseases in the seminal UN Political Declaration on Universal Health Coverage
Read moreMoU with WHO
December 19, 2019
2019, December – RDI and the World Health Organization sign Memorandum of Understanding outlining a framework for collaboration
Read moreCOVID-19 STATEMENT
December 1, 2020
2020, June – RDI Member Organisations worldwide publish a common statement on the COVID-19 responses and recovery
Read moreIRDiRC/RDI Global Working Group
October 1, 2021
November 2021, RDI and the International Rare Diseases Research Consortium (IRDiRC) launch the IRDiRC/RDI Global Acess Working Group to improve access to treatments.
Read moreUN Resolution
December 16, 2021
16 December, UN General Assembly formally adopts UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”
Read moreFormal Side-Event at the UN HLM
September 21, 2023
2023, September – RDI, EURORDIS-Rare Diseases Europe, Agrenska, FEDER and the NGO Committee for Rare Diseases co-organize a formal side event at the United Nations, sponsored by the Permanent Missions of Spain and Sweden and the Ministry of Health of Qatar, on the achieving Universal Health Coverage for PLWRD
Read more