medicine

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

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.

[UN Observance] International Day for Universal Health Coverage

On December 12 each year, the United Nations commemorates International Day for Universal Health Coverage. To read more and stay apprised of relevant events, please visit  https://www.un.org/en/observances/universal-health-coverage-day.

__________________________________________________________________________________________

CoNGO Notes: For more information on the NGO Committee on Human Rights, please email the co-chairs at bknotts@uua.org or bobbinassar@gmail.com. For more information on the NGO Committee on Mental Health, please visit ngomentalhealth.org

[UN observance] World Diabetes Day

The United Nations marks World Diabetes Day annually on November 14. To learn more about how diabetes affects the world and how to participate in this year’s events, please visit un.org/en/events/diabetesday.

_____________________________________________________________________________________

CoNGO Notes: For more information on the NGO Committee on Human Rights, please email the co-chairs at bknotts@uua.org or bobbinassar@gmail.com. For more information on the NGO Committee on Ageing-NY, please visit ngocoa-ny.org. For more information on the NGO Committee on Ageing-Geneva, please visit ageingcommitteegeneva.org. For more information on the NGO Committee on Ageing-Vienna, please visit ngoageingvie.org. For more information on the NGO Committee on Children’s Rights, please email the chair at marjones@rr.nyc.com. 

 

1 2