Upcoming Events

Save the Date 21st February 2019

Rare Disease Day at the United Nations

Second High-Level Meeting of the NGO Committee for Rare Diseases

United Nations Headquarters, New York

The NGO Committee for Rare Diseases  Rare disease day

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 meeting 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. 

It will be possible to follow the event live online through webcast (link available in February).

Please email [email protected] with any questions.

Picture from our last meeting

The NGO Committee for Rare Diseases officially inaugurated on November 11th 2016 at the United Nations in
New York during its First High-Level Meeting: 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.

With the suppport of

Ågrenska     EURORDIS     Rare diseases International

The second High Level Meeting is held in February 2019 in order to mark the occasion of Rare Disease Day – the annual observance held to raise awareness with policy makers and the general public – and 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.

The meeting 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.

Past Events

2017

Rare Diseases International Policy Event 10 February 2017, Geneva, Switzerland,
The Right to Health: The Rare Disease Perspective

Rare Diseases International Policy Event
10 February 2017, Geneva, Switzerland, rarediseasesinternational.org See details of the event here

2016

Global Gathering for Rare Diseases: Inauguration of the NGO Committee for Rare Diseases
Global Gathering for Rare Diseases:

Inauguration of the NGO Committee for Rare Diseases

11 November 2016, United Nations HQs, New York, USA

See details of the event here