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, invite you to join people living with a rare disease and policy makers at a unique face-to-face discussion.
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.
|'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
|Speakers already confirmed at the event include Dainius Pūras, UN Special Rapporteur, Chris Austin, Chair of the International Rare Diseases Research Consortium (IRDiRC), National Health Institutes, USA, and Yann Le Cam, Chief Executive Officer of EURORDIS|
There is no registration fee for this event. Please be advised that accommodation and travel expenses are not covered by the organisers.
After registering, you will receive a confirmation email closer to the date of the event. Please be aware that places are limited - you will need to receive confirmation in order to attend.
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