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.
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:
- Hawa Dramé, Founder, Fondation Internationale Tierno et Mariam (FITIMA), Burkina Faso and Guinea
- Christina Fasser, President, Retina International & Vice-Chair, ProRaris
- Jim Green, President, International Niemann-Pick Disease Alliance
- Yann Le Cam, CEO, EURORDIS-Rare Diseases Europe
- Ramaiah Muthyala, Founder & President, Indian Organization for Rare Diseases
- Olivier Timmis, CEO, AKU Society
- Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders; Chair, Rare Diseases International
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.