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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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TZID:UTC
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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:20220506T090000
DTEND;TZID=UTC:20220506T160000
DTSTAMP:20260508T212744
CREATED:20220426T102945Z
LAST-MODIFIED:20220503T073323Z
UID:10000189-1651827600-1651852800@www.rarediseasesinternational.org
SUMMARY:4th Symposium on Birth Defects and Rare Diseases (Hybrid)
DESCRIPTION:Theme: “Patient Centricity: Key to Achieving Universal Health and Inclusion” \nMary Wang (Science Policy Manager\, Rare Diseases International) and Matt Bolz-Johson (Programme Director – Collaborative Global Network for Rare Diseases\, Rare Diseases International) will speak about regional and global collaborative initiatives. 
URL:https://www.rarediseasesinternational.org/event/birth-defects-symposium-2022-5/
LOCATION:Kumasi\, Ghana
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20220506T120000
DTEND;TZID=Europe/Helsinki:20220506T130000
DTSTAMP:20260508T212744
CREATED:20220503T095521Z
LAST-MODIFIED:20220504T091057Z
UID:10000201-1651838400-1651842000@www.rarediseasesinternational.org
SUMMARY:IFSBH MEMBERS TRAINING : From local to global – How to influence international actions through national advocacy (Online)
DESCRIPTION:The next IF members training on policy and advocacy will take place on May 6 2022 at 12 PM Brussels time. \nA session to discuss the role of civil society in shaping the activities of international organisations and how campaigns for actions are designed and implemented. \nDolores Cvitičanin – Public Affairs Manager at RDI – will speak further on how to use a UN Resolution on a National Advocacy level.\n\nParticipation is limited to two participants from each IF member association\n 
URL:https://www.rarediseasesinternational.org/event/ifsbh-membership-training-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20220507T090000
DTEND;TZID=Europe/Helsinki:20220507T180000
DTSTAMP:20260508T212744
CREATED:20220426T104133Z
LAST-MODIFIED:20220426T104649Z
UID:10000193-1651914000-1651946400@www.rarediseasesinternational.org
SUMMARY:Fabry Expert Meeting 2022 (Online)
DESCRIPTION:Every year\, Fabry International Network brings patients together where they will receive valuable\, up-to-date information about Fabry disease as well as on-going clinical trial updates and new trial opportunities.
URL:https://www.rarediseasesinternational.org/event/fabry-expert-meeting-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220508
DTEND;VALUE=DATE:20220512
DTSTAMP:20260508T212744
CREATED:20220506T102318Z
LAST-MODIFIED:20220506T102454Z
UID:10000225-1651968000-1652313599@www.rarediseasesinternational.org
SUMMARY:WFH 2022 WORLD CONGRESS
DESCRIPTION:The World Federation of Hemophilia (WFH) and the Canadian Hemophilia Society (CHS) will welcome the global bleeding disorders community to the WFH 2022 World Congress—a major hybrid event of the international bleeding disorders community. The in-person component of the hybrid Congress will take place in Montreal\, Canada\, with select sessions being broadcast through our virtual platform.
URL:https://www.rarediseasesinternational.org/event/wfh-world-congress-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220509T000000
DTEND;TZID=UTC:20220509T000000
DTSTAMP:20260508T212744
CREATED:20220509T112421Z
LAST-MODIFIED:20220509T112421Z
UID:10000229-1652054400-1652054400@www.rarediseasesinternational.org
SUMMARY:UIA Associations Round Table Brussels 2022
DESCRIPTION:The UIA Round Tables provide an opportunity to learn through networking and through practice\, to meet other international associations and share experience and knowledge to help you run your organization better.
URL:https://www.rarediseasesinternational.org/event/uia-round-table-brussels-2022-5/
LOCATION:Marriott Grand Place\, Brussels\, Belgium
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220513
DTEND;VALUE=DATE:20220514
DTSTAMP:20260508T212744
CREATED:20220506T092645Z
LAST-MODIFIED:20220506T092645Z
UID:10000209-1652400000-1652486399@www.rarediseasesinternational.org
SUMMARY:Improving Rare Disease Diagnostics & Care (Online)
DESCRIPTION:Join The Hill for a discussion on improving the diagnostic journey for the 30 million Americans living with rare disease.
URL:https://www.rarediseasesinternational.org/event/diagnostic-care-rd-2022-5/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220513
DTEND;VALUE=DATE:20220516
DTSTAMP:20260508T212744
CREATED:20220506T101026Z
LAST-MODIFIED:20220506T101228Z
UID:10000221-1652400000-1652659199@www.rarediseasesinternational.org
SUMMARY:Congreso Internacional Duchenne Parent Project España
DESCRIPTION:International congress to facilitate families and those affected to provide information and share experiences to promote support and learn about the different aspects of Duchenne and Becker Muscular Dystrophy.
URL:https://www.rarediseasesinternational.org/event/congreso-internatcional-duchenne-2022-5/
LOCATION:Novotel Madrid Center\, Madrid\, Spain
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220517
DTEND;VALUE=DATE:20220518
DTSTAMP:20260508T212744
CREATED:20220516T084441Z
LAST-MODIFIED:20220516T084814Z
UID:10000244-1652745600-1652831999@www.rarediseasesinternational.org
SUMMARY:Stakeholders Workshop : A call for action on Rare Diseases (closed meeting)
DESCRIPTION:Rare Disorders Kenya\, together with Kenya Medical Research Institute (KEMRI)-CPHR and Cambridge Africa are holding a stakeholders workshop on rare diseases in Kenya. \nTheme: A call for action on Rare Diseases
URL:https://www.rarediseasesinternational.org/event/workshop-call-for-action-kenya-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220517
DTEND;VALUE=DATE:20220520
DTSTAMP:20260508T212744
CREATED:20220506T100033Z
LAST-MODIFIED:20220506T100238Z
UID:10000217-1652745600-1653004799@www.rarediseasesinternational.org
SUMMARY:Online workshop: Understanding access and reimbursement
DESCRIPTION:This workshop will outline the basics of access and reimbursement: what it means\, when it happens\, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for.
URL:https://www.rarediseasesinternational.org/event/woekshop-access-reimbursement-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20220519T190000
DTEND;TZID=Europe/Paris:20220519T203000
DTSTAMP:20260508T212744
CREATED:20220516T144718Z
LAST-MODIFIED:20220517T075402Z
UID:10000248-1652986800-1652992200@www.rarediseasesinternational.org
SUMMARY:How Patient Involvement is Making a Difference in HTA: PCIG Webinar
DESCRIPTION:HTAi’s Patient and Citizen Involvement in HTA Interest Group (PCIG) will be looking at “Stakeholders’ perspectives of impact in patient involvement in HTA.” The project team collects and evaluates multi-stakeholder perspectives about the perceived difference patient involvement has made in specific HTAs or HTA processes. \nThe team and invited speakers will share case examples of impact from different stakeholders’ perspectives and review the preliminary findings from this research\, highlighting the various domains and types of impact identified. The webinar will also provide an opportunity to discuss good practice and encourage reflection on patient involvement processes.
URL:https://www.rarediseasesinternational.org/event/patient-involvement-rare-deases-webinar-2022-5/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-15.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220522
DTEND;VALUE=DATE:20220523
DTSTAMP:20260508T212744
CREATED:20220512T170839Z
LAST-MODIFIED:20220512T170839Z
UID:10000241-1653177600-1653263999@www.rarediseasesinternational.org
SUMMARY:Walk the Talk: Health For All Challenge\, WHO
DESCRIPTION:The World Health Organization will organize the 3rd edition in Geneva of the “Walk the Talk: Health For All Challenge” on Sunday 22 May\, on the morning of the World Health Assembly. \nThis in-person event will invite participants to run or walk over two routes: 3 km and 4.2 km. People of all ages and abilities will start at Place des Nations from 8.30am. \nPeople around the world are invited to take part in the event by tracking their performances through a dedicated app. By registering\, participants will receive a login to take part-in anywhere in the world. More information is coming soon.
URL:https://www.rarediseasesinternational.org/event/walk-the-talk-who-2022-5/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-11.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220524T183000
DTEND;TZID=UTC:20220524T203000
DTSTAMP:20260508T212744
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=Europe/Paris:20220531T090000
DTEND;TZID=Europe/Paris:20220531T180000
DTSTAMP:20260508T212744
CREATED:20220512T165800Z
LAST-MODIFIED:20220512T170141Z
UID:10000237-1653987600-1654020000@www.rarediseasesinternational.org
SUMMARY:Colloque Scientifique Annuel 2022\, Fondation Maladies Rares
DESCRIPTION:Each year\, Plateforme Maladies Rares are organising a conference bringing together the major players in rare disease research.
URL:https://www.rarediseasesinternational.org/event/colloque-scientifiques-foundation-maladies-rares-2022-5/
LOCATION:College de France\, 11 Place Marcelin Berthelot\, Paris\, 75231\, France
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-10.png
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