‘No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases’
Helen Clark, Administrator of the UN Development Programme
To mark the occasion of Rare Disease Day 2017, Rare Diseases International - RDI, 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, will host a unique face-to-face discussion entitled The Right to Health: The Rare Disease Perspective on February 10th in Geneva, Switzerland.
The event is the first of its kind to be organised in Geneva and will gather international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to discuss why and how rare diseases should be included in the global health agenda.
Christina Fasser, president of Retina International and Vice Chair of Pro Raris, The Rare Disease Alliance in Switzerland will open the event and will participate in a panel discussion about patient led research.