Policy Events
2020
‘A Rare Exhibit’ – honouring life with a rare disease
Rare Disease Day photo exhibition honouring life with a rare disease
Organised by RDI on the margins of the 43rd Session of the Human Rights Council
25 February 2020, Palais des Nations, Geneva (Switzerland)
2019
Informal Side Event at the 72nd World Health Assembly
‘Universal Health Coverage: including rare diseases to leave no one behind’
Event by RDI in collaboration with the NGO Committee for Rare Diseases
23 May 2019, Palais des Nations, Geneva (Switzerland)
Formal Side Event at the 72nd World Health Assembly
‘How transformational digital technologies can contribute to leave no one behind in UHC: the case of rare diseases’
Event sponsored by the Permanent Missions of the EU, Romania and Kuwait, with an additional nine Member States and the support of RDI
23 May 2019, Palais des Nations, Geneva (Switzerland)
Rare Disease Day Policy Event at the United Nations
Second High-Level Event of the NGO Committee for Rare Diseases
Co-organised by Agrenska, EURORDIS and RDI
21 February 2019, UN Headquarters, New York (USA)
2017
Rare Diseases International Policy Event
‘The Right to Health: The Rare Disease Perspective’
Organised by RDI to mark the occasion of Rare Disease Day
10 February 2017, Campus Biotech, Geneva (Switzerland)
2016
NGO Committee for Rare Diseases Inauguration
‘Global Gathering for Rare Diseases’
An initiative by EURORDIS and Agrenska Foundation, in cooperation with RDI
11 November 2016, UN Headquarters, New York (USA)