Rare Disease Day Policy Event at the United Nations

Thursday, 21 February 2019

Organised by the NGO Committee co-founders (EURORDIS and Ågrenska) and Rare Diseases International, this is the second high-level event of the NGO Committee for Rare Diseases and will be taking place to mark the occasion of Rare Disease Day 2019 happening on 28 February.

Over 30 speakers representing countries and regions from around the world, including ambassadors and officials from the Permanent Missions to the UN of Brazil, Estonia, Japan, Kuwait, Thailand, and the United Arab Emirates, will lead discussions on how to advance rare diseases as a global public health priority within the United Nations.

The event  which will take the format of an all day round tabel will bring together 100 participants from the international NGO community, UN agencies, national governments, and academic and research institutions.

At the event, the NGO Committee for Rare Diseases will launch a call for:

  1.  The integration of rare diseases into the upcoming landmark UN political declaration on universal health coverage;
  2.  A UN resolution on rare diseases

Click here for the agenda.

The event will be streamed live for those unable to attend but keen to follow the proceedings. Watch live from the United Nations Headquarters in New York from 09:45 – 18:15 EST via webtv.un.org/

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