MILESTONES

UN Resolution

December 16, 2021

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”

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IRDiRC/RDI Global Working Group

October 1, 2021

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.

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COVID-19 STATEMENT

December 1, 2020

COVID-19 STATEMENT

2020, June – RDI Member Organisations worldwide publish a common statement on the COVID-19 responses and recovery

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MoU with WHO

December 19, 2019

MoU with WHO

2019, December – RDI and the World Health Organization sign Memorandum of Understanding outlining a framework for collaboration

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UN Declaration on UHC includes Rare Diseases

September 23, 2019

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

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UHC 2030

September 3, 2019

UHC 2030

2019, December – RDI joins the Civil Society Engagement Mechanism of UHC2030

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First United Nations Policy Event

January 21, 2019

First United Nations Policy Event

2019, February – the NGO Committee for Rare Diseases and RDI co-organise policy event at the United Nations

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Formal Registration

May 1, 2018

Formal Registration

2018, May – RDI becomes an independent organisation with a separate legal identity RDI Statutes

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RDI LAUNCHED

May 1, 2015

RDI LAUNCHED

RDI is initiated by Rare Disease National Alliances for USA, Canada, Japan, Australia and Russia and EURORDIS – Rare Disease Europe. Read Statutes

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