Rare Diseases International Policy Event )

The Right to Health: The Rare Disease Perspective

 10 February 2017, Campus Biotech, Geneva, Switzerland


To mark the occasion of Rare Disease Day 2017, Rare Diseases International, the Global Alliance of Rare Disease Patients, in partnership with the BLACKSWAN Foundation, the Swiss Foundation for Research on Orphan Diseases, and EURORDIS-Rare Diseases Europe, held a unique face-to-face discussion with people living with rare diseases, health research experts and policymakers. The event was the first of its kind to be organized in Geneva to discuss why and how rare diseases should be included in the global health agenda. The policy event featured eminent speakers including: Dainius Pūras, United Nations Special Rapporteur on the Right to Health, Ruth Dreifuss, Co˗Chair of the UN SG’s High-Level Panel on Access to Medicines and former President of the Swiss Confederation, Peter Beyer, Senior Advisor, Essential medicines and health products Department, World Health Organization (WHO), Maria Luisa Silva, Director of the United Nations Development Programme (UNDP) Office in Geneva, Christopher Austin, MD, Director of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH), USA.


Here some of the highlights of the event:

  • It is important to address rare diseases as a human rights and public health issue in order to assure non-discrimination, equity and justice to people living with rare diseases.
  • Rare diseases are a reality all over the world and African countries are not spared. In this region of the world, the lack of information, screening and management associated with the economic precariousness aggravate the consequences of these pathologies.
  • Many rare diseases occur in childhood. Children with rare diseases have a right to quality treatment, care and support and should not be discriminated because they have not received a diagnosis. Addressing rare diseases is also a way to reduce under 5 mortality rate.
  • Greater investments are required from governments to close existing gaps in research and address unmet health needs like in the case of rare diseases. Multi-stakeholder platforms are important tools to define and act upon issues in the field of rare diseases.
  • States must ensure existing medicines are affordable and accessible on a non-discriminatory basis. More must be done to encourage the research and development of needed medicines, and to facilitate the procurement and distribution of those medicines to those population groups and in those countries where they are needed most.
  • Rare diseases must be part of the 2030 Agenda for Sustainable Development adopted by the UN and governments must recognize the importance of rare diseases to meet Sustainable Development Goals. Innovation through research and health technologies is the key element to enlarge health coverage.
  • Collaboration, sharing and public-private partnerships are the key to success in developing research on rare diseases.

The event was organized under the Patronage of the Federal Councillor Alain Berset, Head of the Swiss Federal Department of Home Affairs. Dr Tedros Adhanom Ghebreyesus, candidate for WHO Director-General 2017 and Minister of Ethiopia supported the policy event with a written Statement.

The event was streamed via @rarediseasesint and #rdiGeneva. Watch the recordings of the live-stream here: – Part 1 – Part 2 – Part 3 – Part 4. This is an event organized in partnership and with support from the BLACKSWAN Foundation and EURORDIS, with the participation of IRDiRC, the NGO Committee for Rare Diseases, and Orphanet.