Rare Diseases International Policy Event 2017

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’

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.

• Programme
• Speakers at a glance
• Participants list
• Press Release
• Statement of support from Dr. Tedros Ghebreyesus, Candidate for Director-General of the World Health Organisation
• Photos
• Additional Documents

Presentations

• Presentation from Christopher Austin, Director, National Center for Advancing Translational Sciences (NCATS)
• Presentation from Hawa Dramé, Founder, Fondation Internationale Tierno et Miriam (FITIMA)
• Presentation from Yann Le Cam, Chief Executive Officer, EURORDIS-Rare Diseases Europe
• Presentation from Anders Olauson, Chief Executive Officer, Ågrenska Foundation
• Presentation from Dainius Pūras, Special Rapporteur on the Right to Health, United Nations

Speeches

• Speech from Dr. Olivier Menzel, Chair and Founder, BLACKSWAN Foundation
• Speech from Cyril Ritchie, President, Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)

Media Coverage

• IP Watch article – The Problem With Rare Diseases
• Leaving no one ‘LCA patient’ behind
• Radio NoRo interview with Yann Le Cam
• SRF article with Christina Fasser (in German)
• Radio SRF interview with Christina Fasser (in German)

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.