The RDI Global Meeting brought together over 180 stakeholders from 48 countries including patient organisations, industry, academia, research, government as well as philanthropic organisations to hear about the actions putting rare diseases on the global agenda and opportunities for collaboration.
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Participant Breakdown
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Watch the Global Meeting 2020
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Meeting Presentations
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Leveraging Universal Health Coverage to advance rare disease policy:
•Celebrating the inclusion of rare diseases in landmark United Nations
Political Declaration on UHC
Durhane Wong-Rieger, RDI Chair
•Advocating for the integration of rare diseases in national policies within the framework of UHC
Alba Ancochea, FEDER – Federacion Española de Enfermedades Raras
Global collaborations to achieve Universal Health Coverage:
•Memorandum of Understanding (MoU) between RDI and the World Health
Organization
Yann Le Cam, EURORDIS
Matt Bolz Johnson, Advisor CGN4RD
Ana Rath, Orphanet
Working with WHO to improve access to rare disease medicinal products:
•WHO Essential Medicines List and WHO Essential in Vitro Diagnostics List: Why, What & How
Yann Le Cam, EURORDIS
•Case study of a patient group that has a diagnostic included in a WHO Priority List
Johan Prévot, IPOPI – International Patient Organisation for Primary Immunodeficiencies
Open Session: COVID-19 Global Health Crisis: Responses from the rare disease patient community
Iberoamerican Alliance for Rare Diseases (ALIBER)