This events calendar is an announcement service by CoNGO to its member organizations, its NGO substantive committees, the wider civil society community, and the UN System. All events included here, including their accuracy, are the sole responsibility of their organizers. Unless explicitly indicated, inclusion of an event in this calendar does not constitute CoNGO endorsement of the event.  If you have an event or meeting you want to be considered for announcement here, please email us at infonews@ngocongo.org.

Loading Events

« All Events

  • This event has passed.

Call for a UN Resolution on Persons Living with a Rare Disease and their Families

4 March @ 14:00 - 16:00 CET

Free

The global rare disease community is calling for a UN Resolution Addressing the Needs of Persons and Families Living with a Rare Disease (PLWRD).

Over 300 million people worldwide live with one of over 6,000 identified rare diseases. Rare diseases are often chronic, complex, disabling and life threatening. Persons and families living with a rare disease confront a lack of public awareness as well as a paucity of expertise and knowledge of rare diseases, exposing them to greater social, health and economic vulnerability.

To ensure the well-being of persons living with a rare disease, RDI in partnership with EURORDIS and the NGO Committee for Rare Diseases, is a calling a UN Resolution that recognizes the complex needs of persons living with a rare diseases and promotes the human rights and full participation in society of all people.

Register here!

Preliminary Agenda:

  • Welcome from Rare Diseases International
  • Official Rare Disease Day 2021 Video
  • Opening Remarks from the NGO Committee for Rare Diseases
  • Call for a UNGA Resolution on Rare Diseases
  • Testimonies from Person’s Living with a Rare Disease around the world
  • Video – Rare Diseases at the United Nations
  • Panel Discussion: “Why a UN Resolution and Why Now”
  • Message from International Rare Disease Champion
  • UN Member States Support
  • Key take home message and next steps

Key Asks for the UN Resolution on Rare Diseases would include:

1. Inclusion and participation of PLWRD & their families in society and respect of their human rights

2. Improvement of health and social outcomes with the appropriate care and support within existing resources

3. Promotion of national strategies and actions

4. Introduction of rare diseases into UN agencies and programmes

5. Regular reports by the UN Secretariat to monitor the progress on the implementation.

_____________________________________________________________________________________________

CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. For more information on the NGO Committee on the Rights of Indigenous Peoples, please visit facebook.com/NGOCoRIP. For more information on the NGO Committee on Social Development, please visit ngosocdev.org.