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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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BEGIN:VTIMEZONE
TZID:UTC
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TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20250101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250212T090000
DTEND;TZID=UTC:20250212T170000
DTSTAMP:20260508T044325
CREATED:20250131T061408Z
LAST-MODIFIED:20250131T061408Z
UID:10000370-1739350800-1739379600@www.rarediseasesinternational.org
SUMMARY:3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases
DESCRIPTION:Instituto Unidos Pela Vida will host the 3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases on February 12\, from 9:00 AM to 5:00 PM\, BRT. The event will take place at Blue Tree Premium Morumbi in São Paulo\, Brazil\, and will also be available online via the Congresse.me platform. \nThe forum aims to provide a platform for discussing Health Technology Assessment (HTA) processes\, with a special focus on rare diseases. It will explore the importance of monitoring\, the challenges involved\, and ways to empower the rare disease community to actively participate in social engagement opportunities.The event will be hosted and moderated by Verônica Stasiak Bednarczuk\, founder and executive director of Unidos pela Vida\, alongside organization directors Marise Basso Amaral and Cristiano Silveira. The Forum will feature simultenous translation into Brazilian sign language\, English\, and Spanish. Register here.
URL:https://www.rarediseasesinternational.org/event/3rd-brazilian-health-technology-assessment-hta-forum-for-rare-diseases/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/English-Feed.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250212T140000
DTEND;TZID=UTC:20250212T150000
DTSTAMP:20260508T044325
CREATED:20250109T104206Z
LAST-MODIFIED:20250109T104250Z
UID:10000366-1739368800-1739372400@www.rarediseasesinternational.org
SUMMARY:RDI PUBLIC WEBINAR: Rare Disease Expertise \, Centers and Networks: Results of the Survey
DESCRIPTION:Join us to for a public webinar presenting the results of the RDI’s recent survey on rare diseases expertise. \nWe will share key findings from the survey on rare disease expertise around the globe\, including insights into care-providing centers\, networks\, and collaborations. \nIf you would like to attend and haven’t register yet\, register here.
URL:https://www.rarediseasesinternational.org/event/rdi-public-webinar-rare-disease-expertise-center-and-networks-results-of-the-survey/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/Updated-WHA-Public-Webinar-graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250227T143000
DTEND;TZID=UTC:20250227T160000
DTSTAMP:20260508T044325
CREATED:20250122T115845Z
LAST-MODIFIED:20250213T085252Z
UID:10000368-1740666600-1740672000@www.rarediseasesinternational.org
SUMMARY:Rare Disease Day Webinar-From Grassroots to Global: Growing Momentum towards the WHA Resolution on Rare Diseases
DESCRIPTION:This year’s Rare Disease Day theme “More than You Can Imagine” reminds us of the milestones we have achieved by working together as a global community — most recently\, in our collective efforts to advocate for a World Health Assembly Resolution on Rare Diseases. \nThere is more power\, dedication and commitment in our community than we ever imagined\, and we are proud to bring our members\, partners and friends together to reflect on our progress — how far we have come\, and how far we can go. \nJoin us for a public webinar on Thursday\, 27 February 2025 at 14:30 CET and find out how we can imagine a better future for Persons Living with a Rare Disease — together! \nRegister now.
URL:https://www.rarediseasesinternational.org/event/rare-disease-day-webinar-from-grassroots-to-global-growing-momentum-towards-the-wha-resolution-on-rare-diseases/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/RDD-2025-Webinar-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250305
DTEND;VALUE=DATE:20250308
DTSTAMP:20260508T044325
CREATED:20250128T104346Z
LAST-MODIFIED:20250128T104728Z
UID:10000369-1741132800-1741391999@www.rarediseasesinternational.org
SUMMARY:RE(ACT) Congress and IRDiRC Conference
DESCRIPTION:Continuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition)\, this conference brings together visionary leaders\, distinguished experts\, and emerging talents from diverse scientific domains\, converging to unveil groundbreaking research\, foster dialogue\, and shape policies crucial to rare disease research. \nSince its inception in 2012\, the RE(ACT) Congress\, pioneered by the BLACKSWAN Foundation\, has catalyzed scientific collaboration and advancement in rare and orphan diseases. Meanwhile\, IRDiRC\, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health\, has been pivotal in galvanizing global cooperation among researchers\, funders\, and patient advocacy groups within a multinational framework. \nThis joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference\, in partnership with the European Rare Diseases Research Alliance (ERDERA)\, Eurordis (the European Alliance of Patient Organizations)\, symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.
URL:https://www.rarediseasesinternational.org/event/react-congress-and-irdirc-conference/
LOCATION:Brussels Pullman Centre Midi
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/REACT-Conf-2025.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250327
DTEND;VALUE=DATE:20250329
DTSTAMP:20260508T044325
CREATED:20250306T090837Z
LAST-MODIFIED:20250306T090837Z
UID:10000372-1743033600-1743206399@www.rarediseasesinternational.org
SUMMARY:5th International Conference on Rare Diseases\, Greece
DESCRIPTION:The 5th International Conference on Rare Diseases\, organized by RDI Member Rare Diseases Greece\,  brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to set a course for the future of rare diseases.
URL:https://www.rarediseasesinternational.org/event/5th-international-conference-on-rare-diseases-greece/
LOCATION:Technopolis City of Athens\, Athens\, Greece
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2025/03/Greece.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250417
DTEND;VALUE=DATE:20250421
DTSTAMP:20260508T044325
CREATED:20240911T100224Z
LAST-MODIFIED:20250207T110620Z
UID:10000361-1744848000-1745193599@www.rarediseasesinternational.org
SUMMARY:MENA Congress for Rare Diseases 2025
DESCRIPTION:MENA Congress for Rare Diseases 2025 will take place in Abu Dhabi from 17 to 20 April 2025. It will be the largest event for rare diseases with more than 160 speakers covering variable fields of rare diseases. \nYou can use the “SPK120” for registration at nominal fee (only 120 AED instead of the regular registration fee of 2400 AED). \nFor more information and registration please visit the website: https://menararediseases.com/
URL:https://www.rarediseasesinternational.org/event/mena-congress-for-rare-diseases-2025/
LOCATION:Beach Rotana\, Abu Dhabi\, United Arab Emirates
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2024/09/Opening-Session-MENA-Congress-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250521T180000
DTEND;TZID=UTC:20250521T210000
DTSTAMP:20260508T044325
CREATED:20250306T090455Z
LAST-MODIFIED:20250512T100530Z
UID:10000371-1747850400-1747861200@www.rarediseasesinternational.org
SUMMARY:RDI World Health Assembly Side Event
DESCRIPTION:Rare Diseases International and partners will hold a side event alongside the World Health Assembly in Geneva\, Switzerland on Wednesday\, 21 May 2025 at La Pastorale from 6-8:30 PM. \nThis event will celebrate the significant achievements of our members\, community\, and partners over the last 10 years and chart the next era of advocacy\, policy\, research\, and care. \nWith the potential adoption of the WHA Resolution on Rare Diseases\, this event presents a unique opportunity to build on the progress our community has achieved and continue towards our goal: Universal Health Coverage for Persons Living with a Rare Disease or condition\, no matter where they live. \nMore information is available here.
URL:https://www.rarediseasesinternational.org/event/rdi-world-health-assembly-side-event/
LOCATION:La Pastorale\, Geneva\, 106 Route de Ferney\, Geneva\, Switzerland
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/05/Save-the-Date-WHA-78-Side-Event12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250925T170000
DTEND;TZID=UTC:20250925T180000
DTSTAMP:20260508T044326
CREATED:20250911T150503Z
LAST-MODIFIED:20250911T150707Z
UID:10000373-1758819600-1758823200@www.rarediseasesinternational.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260217T150000
DTEND;TZID=UTC:20260217T160000
DTSTAMP:20260508T044326
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T140000
DTEND;TZID=UTC:20260423T150000
DTSTAMP:20260508T044326
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/04/innovative-financing.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260520T180000
DTEND;TZID=UTC:20260520T210000
DTSTAMP:20260508T044326
CREATED:20260413T113513Z
LAST-MODIFIED:20260413T113513Z
UID:10000376-1779300000-1779310800@www.rarediseasesinternational.org
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/04/wha-event.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260630
DTEND;VALUE=DATE:20260703
DTSTAMP:20260508T044326
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/04/Membership-Meeting-2026-with-RDI-branding1.png
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