Geneva hosts first Rare Diseases International policy eventFebruary 2017
This Friday, a-first-of-its-kind event in Geneva will bring together patients and international experts in the fields of public health, human rights, scientific research and the health industry to discuss why and how rare diseases should be part of the global health agenda.
Follow a live stream of the event on Twitter via #rdiGeneva.
170 registered participants at the first Rare Diseases International policy event ‘The Right to Health: The Rare Disease Perspective’ will discuss ways to address inequality and improve access to health for the estimated 300 million people living with a rare disease around the world.
Held to mark the occasion of Rare Disease Day 2017, the event is organised by Rare Diseases International in partnership with the BLACKSWAN Foundation and EURORDIS-Rare Diseases Europe. It focuses 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 will discuss 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’.
Speakers at the event represent major international organisations including the World Health Organization (WHO), the United Nations Development Program (UNDP) and the Organisation for Economic Co-operation and Development (OECD).
Patient leaders from around the world will participate as speakers, including:
- 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
- Ramaiah Muthyala, Founder & President, Indian Organization for Rare Diseases
- Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders; Chair, Rare Diseases International
The event is initiated by patients through Rare Diseases International and with the participation of the International Rare Diseases Research Consortium (IRDiRC), the NGO Committee for Rare Diseases, Orphanet and the Swiss Alliance for Rare Diseases ProRaris.
Eva Bearryman, Communications Manager, EURORDIS