2024, July – RDI is granted special consultative status with the United Nations Economic and Social Council (ECOSOC)
Formal Side-Event at the UN HLM
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
MoU with WHO
2019, December – RDI and the World Health Organization sign Memorandum of Understanding outlining a framework for collaboration
COVID-19 STATEMENT
2020, June – RDI Member Organisations worldwide publish a common statement on the COVID-19 responses and recovery
UHC 2030
2019, December – RDI joins the Civil Society Engagement Mechanism of UHC2030
UN Resolution
16 December, UN General Assembly formally adopts UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”
IRDiRC/RDI Global Working Group
November 2021, RDI and the International Rare Diseases Research Consortium (IRDiRC) launch the IRDiRC/RDI Global Acess Working Group to improve access to treatments.
UN Declaration on UHC includes Rare Diseases
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
First United Nations Policy Event
2019, February – the NGO Committee for Rare Diseases and RDI co-organise policy event at the United Nations
Formal Registration
2018, May – RDI becomes an independent organisation with a separate legal identity