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Rare Diseases International Policy Event

The Right to Health: The Rare Disease Perspective

10 February 2017, 09.30 – 18.00, Campus Biotech, Chemin des Mines 9, 1202 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

 

Photo Slideshow

Presentations

Speeches

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.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases