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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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DTSTART:20250101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250925T170000
DTEND;TZID=UTC:20250925T180000
DTSTAMP:20260508T044119
CREATED:20250911T150503Z
LAST-MODIFIED:20250911T150707Z
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SUMMARY:RDI Regional Webinar: From WHA Resolution to Action: Next Steps for Latin America and the Caribbean
DESCRIPTION:Join us for a webinar co-hosted by ALIBER\, Casa Hunter and ERCAL to learn how we can work together to ensure that the WHA Resolution has real impact for Persons Living with a Rare Disease in Latin America and the Caribbean.
URL:https://www.rarediseasesinternational.org/event/rdi-regional-webinar-from-wha-resolution-to-action-next-steps-for-latin-america-and-the-caribbean/
CATEGORIES:Hosted by RDI,Regional Meeting
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/09/multilingual2.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260217T150000
DTEND;TZID=UTC:20260217T160000
DTSTAMP:20260508T044119
CREATED:20260210T201029Z
LAST-MODIFIED:20260210T201055Z
UID:10000374-1771340400-1771344000@www.rarediseasesinternational.org
SUMMARY:Mapping Rare Webinar
DESCRIPTION:In celebration of Rare Disease Day 2026\, join us for a global event highlighting achievements from our global community! \nIn this special webinar\, RDI will spotlight inspiring Mapping Rare projects from around the world\, showcasing creativity\, the power of community\, and the voices making rare diseases visible. \n🗓️ 17 February 2026\n🕒 3–4pm CET\n📲 Register here: https://lnkd.in/db8HRPtj \nin English with live Spanish interpreting and multilingual captions \nLet’s connect\, celebrate achievements\, and keep mapping the impact of our global rare disease community
URL:https://www.rarediseasesinternational.org/event/mapping-rare-webinar/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/02/Mapping-Rare-RDD.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T140000
DTEND;TZID=UTC:20260423T150000
DTSTAMP:20260508T044119
CREATED:20260413T111220Z
LAST-MODIFIED:20260413T111220Z
UID:10000375-1776952800-1776956400@www.rarediseasesinternational.org
SUMMARY:Public Webinar: Is Traditional Health Financing Leaving Rare Diseases Behind
DESCRIPTION:How can innovative financing approaches improve equitable access to diagnosis\, treatment\, and care for people living with rare diseases? \nJoin us for a new webinar series bringing together health economists\, policymakers\, patient advocates\, and payers. Through a multistakeholder dialogue\, this series will examine key financing gaps and barriers to access\, map these challenges to relevant innovative financing mechanisms\, discuss enabling conditions for implementation\, and inform policy and advocacy actions. \nIn this first session\, we will focus on the structural challenges in current health financing systems — including small patient populations\, high treatment costs\, HTA limitations\, fragmented risk pools\, and budget impact concerns — that leave 95% of rare diseases without treatment and millions without access to care. The discussion will explore how these systemic weaknesses contribute to inequities in access to diagnosis\, treatment\, and care. This session will ground the series in global evidence and set the stage for exploring innovative solutions in the following webinars. \n🗓️ Thursday 23rd April\, 2pm – 3pm CEST \n📲 Registration link \nStay tuned for more details on speakers soon! \nThis project is being carried out with the support of Fondation Ipsen\, under the aegis of Fondation de France.
URL:https://www.rarediseasesinternational.org/event/public-webinar-is-traditional-health-financing-leaving-rare-diseases-behind/
CATEGORIES:Hosted by RDI
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260520T180000
DTEND;TZID=UTC:20260520T210000
DTSTAMP:20260508T044119
CREATED:20260413T113513Z
LAST-MODIFIED:20260413T113513Z
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SUMMARY:WHA 79 Side Event - Rare Diseases: a Catalyst for Global Health Transformation
DESCRIPTION:Rare diseases expose the stress points of our health systems\, revealing gaps in diagnosis\, care coordination\, innovation\, data\, financing\, and access. More importantly\, they offer a powerful opportunity: \nIf health systems are designed to deliver for rare diseases\, they can deliver for everyone. \nDuring the 79th World Health Assembly\, Rare Diseases International (RDI)  will host a side-event in Geneva entitled “Rare Diseases: A Catalyst for Global Health Transformation“\, which will bring together policymakers\, patient advocates\, industry leaders\, researchers\, and global health institutions to explore how achieving UHC requires reaching those who are hardest to reach. \nThis side event builds on the landmark WHA Resolution “Rare Diseases; a global health priority for equity and inclusion” adopted at the 78th WHA\, which recognized rare diseases as a global health priority\, and called for the development of a 10-Year Global Action Plan on Rare Diseases (GAPRD). As we move toward implementation of these commitments\, it is important to reflect on the transversality of rare diseases and the importance of developing people-centered health systems. \nThis is about improving the lives of the over 300 million persons living with a rare diseases worldwide\, but it’s about scaling innovative solutions and designing systems that are more precise\, integrated\, person-centred\, and equitable. \n📍 Geneva Graduate Institute (Geneva\, Switzerland) \n🗓️ 20 May 2026\, 18:00–20:00 (CEST) (Cocktail reception to follow until 21:00 CEST) \nStay tuned for the agenda and speakers! We look forward to convening diverse voices to align on solutions\, scale impact\, and drive real change across rare diseases and global health.
URL:https://www.rarediseasesinternational.org/event/wha-79-side-event-rare-diseases-a-catalyst-for-global-health-transformation/
LOCATION:Geneva Graduate Institute\, Geneva\, Switzerland
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260630
DTEND;VALUE=DATE:20260703
DTSTAMP:20260508T044119
CREATED:20260413T114117Z
LAST-MODIFIED:20260413T114117Z
UID:10000377-1782777600-1783036799@www.rarediseasesinternational.org
SUMMARY:RDI Membership Meeting: Nairobi\, Kenya
DESCRIPTION:RDI’s 2026 annual membership meeting will take place in person in Nairobi\, Kenya from 30 June – 2 July 2026. It will be co-hosted by Rare Disorders Kenya. \nThis event will bring our community together for an engaging programme\, featuring: \n\n\ninteractive workshops \n\n\ncapacity building sessions \n\n\nthe Aurora Awards \n\n\nthe RDI Annual General Assembly (AGM) \n\n\n 
URL:https://www.rarediseasesinternational.org/event/rdi-membership-meeting-nairobi-kenya/
LOCATION:Novotel Nairobi Westlands\, Nairobi\, Kenya
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