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, organized a unique event to join people living with a rare disease and policy makers for face-to-face discussions.

The event is the first of its kind to be organised in Geneva and gathered 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.


Event under the Patronage of the Federal Councillor Alain Berset, Head of the Federal Department of Home Affairs


Statement of Dr Tedros Adhanom Ghebreyesus, candidate for WHO Director-General 2017 and Minister, Special Advisor to the Prime Minister of Ethiopia



ProgramPress release, Pictures and Web-streaming on Twitter


This is an event in partnership and with support from the BLACKSWAN Foundation and EURORDIS, with the participation of IRDiRC, the NGO Committee for Rare Diseases, and Orphanet.

« 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

Fondation Suisse pour la Recherche sur les Maladies Orphelines