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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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DTSTART:20210101T000000
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DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
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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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DTSTART;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20260502T071451
CREATED:20220721T120524Z
LAST-MODIFIED:20220721T120524Z
UID:10000268-1669125600-1669154400@www.rarediseasesinternational.org
SUMMARY:3rd International FAIR data ‘visiting’ for Duchenne & Other Rare Diseases
DESCRIPTION:For the first time\, the World Duchenne Organization will team up with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimizing the use of patients’ data.
URL:https://www.rarediseasesinternational.org/event/international-fair-data-2022/
CATEGORIES:Hosted by RDI Member
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220513
DTEND;VALUE=DATE:20220516
DTSTAMP:20260502T071451
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20210907
DTEND;VALUE=DATE:20210908
DTSTAMP:20260502T071451
CREATED:20210809T073006Z
LAST-MODIFIED:20211216T092601Z
UID:10000137-1630972800-1631059199@www.rarediseasesinternational.org
SUMMARY:Duchenne Awareness Day
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/duchenne-awareness-day/
CATEGORIES:Hosted by RDI Member
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