The global community of persons living with a rare disease is calling for a UN Resolution on Addressing the the Challenges of Persons Living with a Rare Disease (PLWRD) and their Families.
Over 300 million people worldwide live with one of over 6 000 identified rare diseases.
Rare diseases are often chronic, complex, heavily disabling and life threatening. They have an impact on multiple aspects of the lives of persons living with a rare disease and their families.
PLWRD 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 recognises the complex needs of persons living with a rare disease and promotes the human rights and full participation in society of all people.
The specific combination of vulnerability, inequality, and exclusion experienced by persons living with a rare disease and their families make it necessary to integrate measures to address rare diseases in the broader human rights agenda.
In addition, a Resolution on Rare Diseases is essential to the realisation of the United Nations’ pledge to “leave no one behind” as expressed in the Sustainable Development Goals.
Key Asks for the UN Resolution on PLWRD 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.