RDI Policy Events

2024 – May

Side EVent to 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 FranceMalaysia, 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.

Find out more here.

2023 – september

formal Side-Event to the UN High-Level meeting on universal health coverage (UHC)

A Blueprint for Leaving No One Behind

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)

event banner

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)

See Event Details


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)

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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)

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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)

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Final Report


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)

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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)

See Event Details