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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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DTSTART;TZID=UTC:20241013T090000
DTEND;TZID=UTC:20241013T103000
DTSTAMP:20260508T022438
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SUMMARY:RDI Side Event @ WHS2024: Why Prioritize Rare Diseases in Global Health Policy?
DESCRIPTION:RDI will be hosting a side event “ Why Prioritize Rare Diseases in Global Health Policy” at the World Health Summit in Berlin from 13-15 October. \nThe overall objective of the event is to engage Ministries of Health\, the WHO\, World Bank\, IFPMA representatives and rare disease organizations in a discussion on why it is critical to prioritize rare diseases on the global health agenda\, notably through a WHA Resolution on Rare Diseases. The event aims to explore how to address an existing unmet need in healthcare by calling attention to the challenges faced by PLWRD and their families and showcasing successful initiatives developed worldwide\, and to emphasize the importance of a WHA Resolution on Rare Diseases. \nIn particular\, the event will: \n\nHighlight the significance of investing in rare diseases within the context of UHC.\nDiscuss the significance of the WHA Resolution on Rare Diseases and what it will bring to the rare disease community worldwide.\nExplore the challenges faced by research and development and innovation in rare diseases.\nShowcase innovative solutions and financing mechanisms that can improve access to care for individuals with rare diseases and explore the link with the WHA Resolution on Rare Diseases and corresponding Global Action Plan.\nFacilitate discussion and knowledge-sharing among stakeholders on best practices and future directions in health systems financing for rare diseases.\n\nLimited free passes to the event and the World Health Summit are available to RDI Members on a first-come\, first-serve basis. We invite you to attend our event in-person by contacting comms@rarediseasesint.org  to secure your place here: \nRegister here for the in-person event in Berlin. \nIf you will not be at the World Health Summit\, you can also follow the livestream of the session on RDI’s social media channels – Register here for the online event.
URL:https://www.rarediseasesinternational.org/event/rare-diseases-side-event-why-prioritize-rare-diseases-in-global-health-policy/
LOCATION:Brazzaville Lounge\, JW Marriot Hotel\, Berlin Germany\, Brazzaville Lounge\, JW Marriott Hotel\, Berlin\, Germany
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BEGIN:VEVENT
DTSTART;TZID=UTC:20241016T080000
DTEND;TZID=UTC:20241017T170000
DTSTAMP:20260508T022438
CREATED:20240731T132627Z
LAST-MODIFIED:20240731T132627Z
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SUMMARY:Congress on Rare Diseases for Latin America and the Caribbean
DESCRIPTION:Americas Health Foundation (AHF) presents the second edition of the Congress on Rare Diseases for Latin America and the Caribbean\, a hybrid event designed to delve into the challenges and opportunities related to rare diseases in the region. This congress will address critical issues such as access to treatment\, regulation\, infrastructure\, registration and public policy. The congress will have a solutions-based approach to propose viable and actionable recommedations that benefit patients\, their families\, healthcare systems and society at large. \nThis event will bring together a wide range of key stakeholders\, including patient organizations\, medical and academic associations\, public sector representatives and the pharmaceutical industry. Together\, these participants will work to generate synergies and formulate recommendations to help overcome the challenges faced by the rare disease community in Latin America and the Caribbean. \nThe second edition of the Rare Disease Congress for Latin America and the Caribbean promises to be a dynamic and enriching space\, where collaboration and commitment will be key to advancing the improvement of care and treatment of rare diseases in the region.
URL:https://www.rarediseasesinternational.org/event/congress-on-rare-diseases-for-latin-america-and-the-caribbean/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20241021T130000
DTEND;TZID=UTC:20241022T170000
DTSTAMP:20260508T022438
CREATED:20240701T152253Z
LAST-MODIFIED:20240701T152404Z
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SUMMARY:RDI Membership Meeting
DESCRIPTION:RDI will hold a Membership Meeting over 1.5 days from 21-22 October in Barcelona\, Spain\, followed by our participation in the World Orphan Drug Congress – Europe from 23-25 October. \nDetails to follow.
URL:https://www.rarediseasesinternational.org/event/rdi-membership-meeting/
LOCATION:Hotel SB Plaza\, Carrer de les Ciències\, 11\, 13\, 08908 L'Hospitalet de Llobregat\, Barcelona\, Spain
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