ACTIVITY REPORTS & MILESTONES

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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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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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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UHC 2030

September 3, 2019

UHC 2030

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

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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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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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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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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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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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Formal Side-Event at the UN HLM

September 21, 2023

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

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