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. 

The right to health – making rare diseases a global health priority



10 February 2017, Geneva – A-first-of-its-kind event took place in Geneva which brought together international experts in the fields of public health, human rights, scientific research, patient advocacy and the health industry to discuss why and how rare diseases should be part of the global health agenda.

Almost 150 participants at the Rare Diseases International policy event ‘The Right to Health: The Rare Disease Perspective’ explored ways to address inequality and improve access to health for the estimated 300 million people living with a rare disease around the world.

The event was livestreamed on Twitter via @rarediseasesint and #rdiGeneva.

Held to mark the occasion of Rare Disease Day 2017, the event was organised by Rare Diseases International and in partnership with the BLACKSWAN Foundation and EURORDIS-Rare Diseases Europe.

It focused on the crucial role international collaboration plays in promoting rare diseases as a global public health and research priority, in line with the spirit of the United Nations’ 2030 Sustainable Development Agenda of ‘leaving no one behind’.

Participants discussed how this international cooperation is vital to incentivise research and innovation, to increase access to diagnostics, medicines and treatments, and to ensure rare diseases are integrated into Sustainable Development Goal (SDG) number three to ‘ensure healthy lives and promote well-being for all at all ages’.

The event was organised in the wake of the third International Rare Disease Research Consortium (IRDiRC) Conference in Paris.

The discussions built on the IRDiRC goals, as well as the 2030 Sustainable Development Agenda, the conclusions of the UN High-Level Panel on Access to Medicines, a statement made by Administrator of the UN Development Programme Helen Clark, and the work of the recently launched NGO Committee for Rare Diseases, which is committed to catalysing all efforts towards the delivery of the UN SDGs in support of rare diseases.

Key speakers at the event included:

  • Christopher P. Austin, Chair, International Rare Disease Research Consortium (IRDiRC), National Institutes of Health, USA
  • Peter Beyer, Senior Advisor, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and Health Products, World Health Organization
  • Ruth Dreifuss, Co-Chair of the United Nations Secretary General’s High-level Panel on Access to Medicines, former President of the Swiss Confederation
  • Dainius Pūras, United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Office of the UN High Commissioner for Human Rights
  • Maria Luisa Silva, Director of UN Development Program (UNDP) Office in Geneva

Patient representatives from around the world also participated to illustrate the importance of patient input in efforts to make rare diseases a global health priority:

The event was initiated by patients through Rare Diseases International, under the patronage of the Federal Councillor Alain Berset, Head of the Swiss Federal Department of Home Affairs, and with the participation of the International Rare Diseases Research Consortium, the NGO Committee for Rare Diseases, Orphanet and ProRaris.

It took place in Geneva, the main hub of global health governance, which hosts the United Nations and the headquarters of the World Health Organization.

To read more about the event, to watch recordings of the live-stream and to view all of the supporting documents, please visit here.