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X-WR-CALNAME:Rare Diseases International
X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T140000
DTEND;TZID=UTC:20260423T150000
DTSTAMP:20260513T211937
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:20250521T180000
DTEND;TZID=UTC:20250521T210000
DTSTAMP:20260513T211937
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:20241021T130000
DTEND;TZID=UTC:20241022T170000
DTSTAMP:20260513T211937
CREATED:20240701T152253Z
LAST-MODIFIED:20240701T152404Z
UID:10000358-1729515600-1729616400@www.rarediseasesinternational.org
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/07/RDI-Membership-Meeting-WODC-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241013T090000
DTEND;TZID=UTC:20241013T103000
DTSTAMP:20260513T211937
CREATED:20241001T162749Z
LAST-MODIFIED:20241003T073659Z
UID:10000363-1728810000-1728815400@www.rarediseasesinternational.org
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/10/WHA-Webinar-Save-the-Date-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240830T140000
DTEND;TZID=Europe/Paris:20240830T153000
DTSTAMP:20260513T211937
CREATED:20240704T152502Z
LAST-MODIFIED:20240820T213347Z
UID:10000359-1725026400-1725031800@www.rarediseasesinternational.org
SUMMARY:WHA Resolution on Rare Diseases Webinar
DESCRIPTION:This year\, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025\, and we need your help to make it a success. This webinar\, co-hosted by RDI the Arab Republic of Egypt\, the State of Qatar\, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality. \nJoin us to learn more about: \n\nThe challenges of PLWRD and opportunities to improve equity for PLWRD\nWhy a Resolution is critical and what it will bring at regional and national levels\nHow you can support this initiative\n\nDownload ” Towards a WHA Resolution on Rare Diseases” Webinar Concept Note.
URL:https://www.rarediseasesinternational.org/event/wha-public-webinar/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/07/Updated-WHA-Public-Webinar-graphic-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240529T180000
DTEND;TZID=UTC:20240529T210000
DTSTAMP:20260513T211937
CREATED:20240311T124300Z
LAST-MODIFIED:20240528T092803Z
UID:10000353-1717005600-1717016400@www.rarediseasesinternational.org
SUMMARY:World Health Assembly Side Event\, Geneva
DESCRIPTION:A side event to be held alongside the World Health Assembly in Geneva. The event will be followed by a cocktail reception.
URL:https://www.rarediseasesinternational.org/event/world-health-assembly-side-event-geneva/
LOCATION:Restaurant Vieux Bois\, 12\, avenue de la Paix\, Geneva\, CH-1202\, Switzerland
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/05/WHA-Side-Event-LinkedIn.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20260513T211937
CREATED:20230119T092108Z
LAST-MODIFIED:20230119T092108Z
UID:10000309-1675346400-1675349100@www.rarediseasesinternational.org
SUMMARY:Webinar - What is a Rare Disease
DESCRIPTION:A deep-dive into the internationally endorsed Operational Description of Rare Diseases\, a common reference developed by Rare Diseases International (RDI) working with an expert panel and collaborating with the World Health Organization. \nRegister : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe
URL:https://www.rarediseasesinternational.org/event/whatisard/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-RD-Description-6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221128T000000
DTEND;TZID=UTC:20221128T000000
DTSTAMP:20260513T211937
CREATED:20221122T151913Z
LAST-MODIFIED:20221122T151913Z
UID:10000304-1669593600-1669593600@www.rarediseasesinternational.org
SUMMARY:UNESCO-IBE\, Agrenska\, RDI\, - Improving inclusion of children living with a rare disease through curriculum transformation
DESCRIPTION:UNESCO-IBE is inviting you to join the webinar on “Improving inclusion of children living with a rare disease through curriculum transformation”\, co-organised with the Agrenska Foundation and Rare Diseases International and taking place on 28 November 2022 2:00-4:00 PM – Geneva time – (UTC+1). \nRegister here : https://unesco-org.zoom.us/webinar/register/WN_fLY9Q7WITmGJnL_F9OT09A \nMore info here : http://www.ibe.unesco.org/en/event/webinar-improving-inclusion-children-living-rare-disease-through-curriculum-transformation
URL:https://www.rarediseasesinternational.org/event/webnar-inclusion-children-rare-diseases-unesco-2022-11-28/
CATEGORIES:Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221117T000000
DTEND;TZID=Europe/Paris:20221117T000000
DTSTAMP:20260513T211937
CREATED:20221116T101610Z
LAST-MODIFIED:20221116T101610Z
UID:10000303-1668643200-1668643200@www.rarediseasesinternational.org
SUMMARY:Cobertura Universal de Salud para las enfermedades raras: Preguntas clave
DESCRIPTION:Taller previo a la conferencia\n17 de noviembre de 2022\n11:00-12:15 GMT-3 / 15:00-16:15 CET\nVirtual event → Haga clic aquí para participar : bit.ly/3O8nnVP (no es necesario registrarse antes) \n¡Complete la encuesta antes del taller! → https://forms.gle/z9RL5vSeUftpdeAL7
URL:https://www.rarediseasesinternational.org/event/cus-enfermedades-raras-2022-11-17/
CATEGORIES:Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20221012T140000
DTEND;TZID=Europe/Helsinki:20221012T150000
DTSTAMP:20260513T211937
CREATED:20220922T161142Z
LAST-MODIFIED:20220922T161142Z
UID:10000294-1665583200-1665586800@www.rarediseasesinternational.org
SUMMARY:#ACT4RARE Toolkit - NEW UN Resolution Toolkit Launch (ONLINE)
DESCRIPTION:The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now what? How can you use it? How can you tell you country’s decision makers to act? \nJoin us for a presentation of the #ACT4RARE Toolkit to raise awareness and call action in the UN Resolution. \nThe #ACT4RARE toolkit will include :\n– A summary of the actions all countries have agreed to take\n– Template letters for policymakers\n– Social Media kit – with post images and GIFs\nAnd more !
URL:https://www.rarediseasesinternational.org/event/act4rar-toolkit-launch-2022-10-12/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-17.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T140000
DTEND;TZID=UTC:20220927T150000
DTSTAMP:20260513T211937
CREATED:20220909T141529Z
LAST-MODIFIED:20220909T141529Z
UID:10000284-1664287200-1664290800@www.rarediseasesinternational.org
SUMMARY:Webinar on ICD-11 use for Rare Diseases
DESCRIPTION:As part of WHO ICD-11 webinar series\, the Classifications and Terminologies Unit in collaboration with the Healthier Populations Division at WHO and Rare Diseases International is organising an ICD-11 webinar that will be held on September 27th\, 2022. ONLINE. \nAn Event co-organised by the WHO and Rare Diseases International.
URL:https://www.rarediseasesinternational.org/event/who-icd11-rdi-webinar-2022-09-27/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-10.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220616T140000
DTEND;TZID=UTC:20220616T170000
DTSTAMP:20260513T211937
CREATED:20220425T155554Z
LAST-MODIFIED:20220426T094211Z
UID:10000111-1655388000-1655398800@www.rarediseasesinternational.org
SUMMARY:RDI Membership Meeting (Online)
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/rdi-membership-meeting-2022-6/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220615T140000
DTEND;TZID=UTC:20220615T160000
DTSTAMP:20260513T211937
CREATED:20220425T155154Z
LAST-MODIFIED:20220425T162350Z
UID:10000110-1655301600-1655308800@www.rarediseasesinternational.org
SUMMARY:RDI General Assembly
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/rdi-general-assembly-2022-4-2/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220524T183000
DTEND;TZID=UTC:20220524T203000
DTSTAMP:20260513T211937
CREATED:20220428T105319Z
LAST-MODIFIED:20220428T110013Z
UID:10000197-1653417000-1653424200@www.rarediseasesinternational.org
SUMMARY:RDI Informal Side-Event  75th World Health Assembly
DESCRIPTION:Networking experts\, centers of expertise and patient organizations to Strengthen Health Systems for Rare Diseases
URL:https://www.rarediseasesinternational.org/event/informal-side-event/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220330T160000
DTEND;TZID=UTC:20220330T160000
DTSTAMP:20260513T211937
CREATED:20220317T083035Z
LAST-MODIFIED:20220317T083035Z
UID:10000178-1648656000-1648656000@www.rarediseasesinternational.org
SUMMARY:RDI Webinar - Essential List of Medicinal Products for Rare Diseases
DESCRIPTION:Open only to RDI Member Organisations
URL:https://www.rarediseasesinternational.org/event/ecrd-2022-3/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/03/Website-Event-Image-1.jpg
END:VEVENT
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