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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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DTSTART:20220101T000000
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DTSTART:20220327T010000
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DTSTART:20221030T010000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T140000
DTEND;TZID=UTC:20260423T150000
DTSTAMP:20260521T233300
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:20250925T170000
DTEND;TZID=UTC:20250925T180000
DTSTAMP:20260521T233300
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:20250227T143000
DTEND;TZID=UTC:20250227T160000
DTSTAMP:20260521T233300
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;TZID=UTC:20250212T140000
DTEND;TZID=UTC:20250212T150000
DTSTAMP:20260521T233300
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:20250116T140000
DTEND;TZID=UTC:20250116T150000
DTSTAMP:20260521T233300
CREATED:20250109T103135Z
LAST-MODIFIED:20250116T132110Z
UID:10000365-1737036000-1737039600@www.rarediseasesinternational.org
SUMMARY:RDI Members Information Session on the WHA Resolution
DESCRIPTION:This webinar will be an opportunity to explain in more detail the background for the WHA Resolution on Rare Diseases\, as well as the progress that has been made so far\, the current status of the initiative\, and next steps. \nIt will also be an opportunity for members to ask questions and clarify anything about the initiative.  to update on the resolution activities\, launch the coalition\, and discuss next steps in the resolution process. \n 
URL:https://www.rarediseasesinternational.org/event/rdi-members-information-session-on-the-wha-resolution/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/Updated-WHA-Public-Webinar-graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240529T180000
DTEND;TZID=UTC:20240529T210000
DTSTAMP:20260521T233300
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=UTC:20240412T140000
DTEND;TZID=UTC:20240412T150000
DTSTAMP:20260521T233300
CREATED:20240223T092249Z
LAST-MODIFIED:20240223T092714Z
UID:10000352-1712930400-1712934000@www.rarediseasesinternational.org
SUMMARY:Members Webinar: Understanding the WHO Essential Medicines List: Implications for Rare Diseases
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/webinar-for-members-understanding-the-who-essential-medicines-list-implications-for-rare-diseases/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/02/EML-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240328T140000
DTEND;TZID=UTC:20240328T144500
DTSTAMP:20260521T233300
CREATED:20240208T114702Z
LAST-MODIFIED:20240208T114702Z
UID:10000351-1711634400-1711637100@www.rarediseasesinternational.org
SUMMARY:Members Webinar: WHA Resolution 2025
DESCRIPTION:Join us for a webinar on the WHA Resolution 2025. Open to RDI Members.
URL:https://www.rarediseasesinternational.org/event/members-webinar-wha-resolution-2025/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/02/WHA-Webinar-Save-the-Date.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240301T140000
DTEND;TZID=UTC:20240301T153000
DTSTAMP:20260521T233300
CREATED:20240126T103053Z
LAST-MODIFIED:20240126T103053Z
UID:10000346-1709301600-1709307000@www.rarediseasesinternational.org
SUMMARY:Mapping Rare Launch Webinar
DESCRIPTION:This Rare Disease Day\, join us for the launch of Mapping Rare\, an interactive project to showcase the achievements of our global community.  The map will be launched here on our on 29 February\, followed by a webinar to introduce the project\, including a Q & A with the participants
URL:https://www.rarediseasesinternational.org/event/mapping-rare-launch-webinar/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Interactive-Map-Project-simple.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240206T150000
DTEND;TZID=UTC:20240206T160000
DTSTAMP:20260521T233300
CREATED:20240126T133414Z
LAST-MODIFIED:20240202T184708Z
UID:10000350-1707231600-1707235200@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Asia Pacific
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback. \nAgenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/members-regional-webinar-asia-pacific/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Asia-Regional-Webinars.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240205T160000
DTEND;TZID=UTC:20240205T170000
DTSTAMP:20260521T233300
CREATED:20240126T131322Z
LAST-MODIFIED:20240126T131322Z
UID:10000347-1707148800-1707152400@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Americas
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback. \nAgenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/members-regional-webinar-americas/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Americas-Regional-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231030
DTEND;VALUE=DATE:20231103
DTSTAMP:20260521T233300
CREATED:20230726T105751Z
LAST-MODIFIED:20230927T072703Z
UID:10000330-1698624000-1698969599@www.rarediseasesinternational.org
SUMMARY:RDI Membership Event
DESCRIPTION:This will be the first gathering of the RDI Global Patient Community since Pre-COVID19. While RDI and our members have continued to collaborate to advance rare disease at global and local and to support one another\, we have missed the personal contact.\nPlease join us in from 30 October to 2 November 2023 in Barcelona\, Spain. \nThanks to the generous support of the World Orphan Drug Congress (WODC) Europe\, RDI Members can take part in a number of valuable activities: \n\nRDI Members-Only Meeting  (30 October from 2 PM)\nFull registration to attend all WODC Europe session (31 Oct – 2 Nov)\nParticipation in the WODC Europe designated track of RDI patient-focused\, patient-led sessions (2 Nov am/pm)\n\nWe have compiled some travel information for members attending the event here.
URL:https://www.rarediseasesinternational.org/event/rdi-membership-event/
LOCATION:Fira Barcelona Montjuic\, Barcelona\, Spain
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2023/07/Logo-Rare-Diseases-International-RGB.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221212T140000
DTEND;TZID=Europe/Paris:20221212T153000
DTSTAMP:20260521T233300
CREATED:20221124T084551Z
LAST-MODIFIED:20221124T084551Z
UID:10000305-1670853600-1670859000@www.rarediseasesinternational.org
SUMMARY:UHC DAY 2022 - UNIVERSAL HEALTH COVERAGE FOR RARE DISEASES
DESCRIPTION:On UHC Day 2022\, we call for Universal Health Coverage (UHC) for rare diseases and identify the next steps towards making it a reality for the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide. \n \nExpert speakers will present the main pillars of UHC for rare diseases\, and bring regional examples of positive developments for PLWRD since the Political Declaration on Universal Health Coverage in 2019. \nRegister: https://bit.ly/UHCRARE
URL:https://www.rarediseasesinternational.org/event/event-uhcday2022/
CATEGORIES:Global Event,Hosted by RDI
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-5.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221128T000000
DTEND;TZID=UTC:20221128T000000
DTSTAMP:20260521T233300
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;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20260521T233300
CREATED:20220721T124846Z
LAST-MODIFIED:20220721T124846Z
UID:10000276-1669334400-1669507199@www.rarediseasesinternational.org
SUMMARY:RAREFEST22
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, 2-day rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations\, improving lives and bringing hope to those affected by rare conditions. \nFOR THE EXPERTS. FOR THE CURIOUS. FOR ALL AGES. FOR EVERYONE. FOR FREE!
URL:https://www.rarediseasesinternational.org/event/rarefest-22-2022-11/
LOCATION:The Guildhall  Market Square\, The Guildhall Market Square Cambridge\, Cambridge\, CB2 3QB\, United Kingdom
CATEGORIES:Global Event,Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221117T000000
DTEND;TZID=Europe/Paris:20221117T000000
DTSTAMP:20260521T233300
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:20260521T233301
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:20260521T233301
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:20220615T140000
DTEND;TZID=UTC:20220615T160000
DTSTAMP:20260521T233301
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:20260521T233301
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:20260521T233301
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
END:VCALENDAR