2019

Report of the 2nd High Level Event ‘Rare Disease Day at the United Nations’, 21 February 2019

The event, which took place at the United Nations in New York on 21 February 2019, was organised by Rare Diseases International, EURORDIS-Rare Diseases Europe and Ågrenska to mark the occasion of Rare Disease Day. It brought together more than 100 participants from international civil society, UN agencies and national governments, research and academic institutions, and the private sector. The report provides an overview of the three key strategic outcomes of the event as well as detailing the next steps in advocacy towards the UN.

2018

The “Right to Health” in Rare Diseases

Submission by the NGO Committee for Rare Diseases to the consultation opened to civil society by the Office of the High Commissioner for Human Rights (OHCHR) for its report on “contributions of the right to health framework to the effective implementation and achievement of the health-related Sustainable Development Goals”. This report was commissioned to the OHCHR through Resolution 35/23 of the Human Rights Council (June 2017) and is to be submitted by the OHCHR to the Human Rights Council at its thirty-eighth session, which is in June 2018.


The “Right to Health” in Rare Diseases

Feb 15 2018. NGO CfRDs Submission The Right to Health in Rare Diseases (pdf)

Most People Living with a Rare Disease are Living with Disability

Submission by the NGO Committee for Rare Diseases to the consultation opened to civil society by the United Nations Special Rapporteur on the Rights of people with disabilities, Ms. Catalina Devandas-Aguilar, for its upcoming report on ‘the right of persons with disabilities to the highest attainable standard of health’. This report will be presented to the UN General Assembly in October 2018.

NGO CfRDs Submission to Disability and Right to health Rare Disease Perspective (pdf)
Annex FactSheet Rare Diseases and Disability (pdf)

2017

Report of the official inauguration of the NGO Committee for Rare Diseases at the United Nations Headquarters in New York, 11 November 2016.

With senior officials from the main United Nations agencies and bodies (WHO, UNICEF, UNDP, ECOSOC) and delegates from a number of sponsoring countries (Belgium, Estonia, France,  Malta, Sweden), the event served as a confirmation of the strategy established by the NGO Committee for Rare Diseases: demonstrating the link between the rare diseases community’s goals and the UN 2030 Agenda.

Global Gathering for Rare Diseases: Inauguration of the NGO Committee for Rare Diseases

Global Gathering for Rare Diseases: Inauguration of the NGO Committee for Rare Diseases. Publication Date: February 2017 (pdf)

See details of the event here