United Nations human rights body stresses the need to address rare diseases within Universal Health Coverage

The United Nations Office of the High Commissioner for Human Rights (OHCHR) has made reference to persons living with a rare disease within its recently published annual report to the UN Economic and Social Council (ECOSOC). The 2019 report focuses on the topic of Universal Health Coverage (UHC), and looks at how the human rights framework can contribute to the conceptualization and implementation of UHC.

The inclusion of persons living with a rare disease both within the report and the recommendations is a big step forward for the rare disease community and is the result of years of coordinated advocacy work from a number of organisations, including Rare Diseases International. Alongside EURORDIS-Rare Diseases Europe and the NGO Committee for Rare Diseases, RDI has been working to establish links with the OHCHR since 2017 through hosting a number of events, face to face meetings and contributing to the OHCHR consultation on health and the Sustainable Development Goals from the Human Rights Approach. At the recent RDI side event to the 72nd World Health Assembly, we were pleased to welcome Mr Todd Howland, Chief of the Development, Economic and Social Issues Branch of the OHCHR, who gave a keynote speech in which he confirmed the position of rare diseases within the human rights agenda.

Another key part of our advocacy work in the first half of this year has been the creation of our position paper: Rare Diseases: Leaving no one behind in Universal Health Coverage. The paper, which was developed in consultation with Rare Diseases International members, lays out the key arguments for including persons living with a rare disease within the concept of universal health coverage. This paper has been shared at a number of meetings with the OHCHR Secretariat and we are proud to see that it is one of the key references in the section of the report dedicated to persons living with a rare disease.

Thank you to all Rare Diseases International members who have contributed towards our advocacy work with the OHCHR. One of the principle objectives of RDI is to promote rare diseases as an international public health and research priority, in particular within a human rights framework, and we are pleased to see our efforts starting to bear fruit. Our next advocacy milestone is the UN Political Declaration on Universal Health Coverage, to be adopted by member states at the High Level Meeting on UHC in New York on 23 September