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.
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.
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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.