21st February 2019
Rare Disease Day Policy Event at the United Nations
Second High-Level Event of the NGO Committee for Rare Diseases
Follow the event online through the live-stream!
(link available in February)
To mark the occasion of Rare Disease Day 2019 the NGO Committee for Rare Diseases,
with the sponsorship of the Permanent Mission of Estonia to the United Nations,
is organising its second high-level event at the United Nations.
When: Thursday 21 February 2019, all-day event
Where: Conference Room 8, United Nations Headquarters, New York
Invitation with registration form and preliminary agenda to be circulated shortly (one person per organisation).
Please be aware that confirmation will be necessary in order to attend due to limited seat capacity.
Please email [email protected] with any questions.
The event aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases. It will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.
The NGO Committee for Rare Diseases officially inaugurated on November 11th 2016 at the United Nations in
New York during its First High-Level Event: the ‘Global Gathering for Rare Diseases’, with the participation
of senior officials from the main UN agencies and bodies (WHO, UNICEF, UNDP, ECOSOC) and delegates from
a number of sponsoring countries. On that occasion, the link between the rare diseases community’s goals
and the UN SDGs 2030 Agenda was established and a call for the establishment of rare diseases as a global
public health priority within the UN system was issued.
The Second High-Level Event of the NGO Committee for Rare Diseases is organised by
The Right to Health: The Rare Disease Perspective
Global Gathering for Rare Diseases:
Inauguration of the NGO Committee for Rare Diseases
11 November 2016, United Nations HQs, New York, USA