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, recently had an event wherein people living with a rare disease and policymakers had a unique face-to-face discussion.
The event is the first of its kind to be organised in Geneva and which gathered international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to explore together avenues to address inequality and improve access to health for the more than 300 million people living with a rare disease around the world today. 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'.
High-level global health policies representatives were present, underlining the importance of taking action of rare diseases at the global level: Peter Beyer, from the 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, from the Office of the UN High Commissioner for Human Rights and Maria Luisa Silva, Director of UN Development Program (UNDP) Office in Geneva.
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'. Participant's main conclusion is that rare diseases must now be part of the global health agenda."