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X-WR-CALDESC:Events for Rare Diseases International
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DTSTART;VALUE=DATE:20221201
DTEND;VALUE=DATE:20221203
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SUMMARY:International Conference on Clinical Research Networks for Rare Diseases
DESCRIPTION:The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases\, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure\, activities and identify pathways to stimulate collaboration and interoperability of these networks.   \nMore information: https://cutt.ly/hVSG5hB
URL:https://www.rarediseasesinternational.org/event/clinical-research-networks-for-rare-diseases-2022-12/
CATEGORIES:Hosted by RDI Member
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BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20260509T120633
CREATED:20220721T090705Z
LAST-MODIFIED:20220721T090705Z
UID:10000256-1669852800-1670025600@www.rarediseasesinternational.org
SUMMARY:Duchenne Patient Academy 2022
DESCRIPTION:Duchenne Patient Academy is a collaboration between the World Duchenne Organization and Duchenne Data Foundation. It aims to inspire and equip patient advocates to become change makers and build a better future for people living with dystrophinopathies. So far\, it has trained over 500 DMD/BMD patient advocates from 52 countries. \nONLINE \nApplications for Duchenne Patient Academy open mid-September.
URL:https://www.rarediseasesinternational.org/event/duchenne-patient-academy-2022-12/
CATEGORIES:Hosted by RDI Member
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221212T140000
DTEND;TZID=Europe/Paris:20221212T153000
DTSTAMP:20260509T120633
CREATED:20221124T084551Z
LAST-MODIFIED:20221124T084551Z
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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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20260509T120633
CREATED:20220510T144019Z
LAST-MODIFIED:20221125T170117Z
UID:10000233-1671040800-1671046200@www.rarediseasesinternational.org
SUMMARY:Advocacy in Hemophilia 2022 series
DESCRIPTION:Join the last series session on “Advocacy for Hemophilia” : \n“Crafting a Path that Leaves No One Behind : Ethical and realistic policy considerations for the future of hemophilia care” \n\n\n\n\n\n\n\n\nDecember 14\, 2022\, 10-11:30am ET \n\nRegister for free : http://bit.ly/3VbjxgU
URL:https://www.rarediseasesinternational.org/event/advocacy-in-hemophilia-2022-december/
CATEGORIES:Global Event
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