Rare Diseases International Policy Event 2017

The Right to Health – The Rare Disease Perspective

10 February 2017 Geneva, Switzerland

‘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, 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, held a unique face-to-face discussion with people living with a rare diseases and policymakers.

The event was 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.

The event was streamed via @rarediseasesint and #rdiGeneva. Watch the recordings of the live-stream here:Part 1 – Part 2 – Part 3 – Part 4
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Media Coverage

This was 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.