2024 – October
Side Event AT the World Health Summit, Berlin
RDI WHS 2024 SIde Event
“Why Prioritize Rare Diseases in Global Health Policy: Aligning with the WHA Resolution on Rare Diseases Intiative” was a hybrid event held alongside the 2024 World Health Summit in Berlin, Germany. It brought together representatives from 4 Ministries of Health, the WHO, and PLWRD advocacy organizations to discuss the vital importance of global action to ensure health equity for the rare disease community.
Watch the video:
2024 – May
Side EVent AT the WorLd Health Assembly 77
RDI WHA 77 SIDE EVENT
“Why Invest in Rare Diseases? Ensuring Universal Health Coverage for Persons Living with a Rare Disease”, was an in-person event co-hosted by France, Malaysia, Egypt and Ghana held at the Restaurant Vieux Bois (Av. de la Paix 12, Geneva) on Wednesday, May 29, 2024 at 18:00 CEST.
Key stakeholders, thought leaders, and advocates shared insights on the importance of investing in rare diseases to ensure greater equity for all Persons Living with a Rare Disease (PLWRD) and make Universal Health Coverage (UHC) a reality.
2023 – september
formal Side-Event to the UN High-Level meeting on universal health coverage (UHC)
Formal Side-Event to the UN High-Level Meeting on Universal Health Coverage, ON 21 September 2023. Co-sponsored by Permanent Missions of Spain and Sweden to the United Nations (UN) and the Ministry of Public Health of Qatar. Find out more
2022 – JULY
Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF)
Formal Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), ON 6 July 2022. Co-sponsored by the Office of the High Commissioner for Human Rights (OHCHR) and the Permanent Mission of Spain to the United Nations (UN). Find out more
2022 – MAY
RDI SIDE-EVENT – 75TH WORLD HEALTH ASSEMBLY
RDI Side Event on the margins on the 75th WHO World Health Assembly (WHA) on 24 May 2022. Find out more
2022 – FEBRUARY
RARE DISEASE DAY high-level policy event –“RARE DISEASES: A GLOBAL PRIORITY FOR EQUITY”
The NGO Committee for Rare Diseases, Rare Diseases International (RDI), Ågrenska Foundation, and EURORDIS-Rare Diseases Europe hosted a high-level policy event at EXPO Dubai 2020, on 28 February 2022. Find out more.
2021 – July
Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF)
Co-hosted with Brazil, Spain and Qatar – the Core Group of Member States promoting the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. Watch Event
2021 – March
Rare Disease Day Policy Event – Call for a UN Resolution on PLWRD
4 March 2021 – Official launch of the call for a UN General Assembly Resolution on Addressing the Challenges of PLWRD and their Families
More Information and Watch Event
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)