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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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TZID:UTC
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TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20220101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T000000
DTEND;TZID=UTC:20220930T000000
DTSTAMP:20260506T032420
CREATED:20220923T101733Z
LAST-MODIFIED:20220923T101733Z
UID:10000296-1664236800-1664496000@www.rarediseasesinternational.org
SUMMARY:Primeras Jornadas Iberoamericanas de los Trastornos Hereditarios del Tejido Conectivo
DESCRIPTION:Burgos\, España. Del 27 al 30 de septiembre de 2022. \nEl programa contempla conferencias\, talleres y mesas redondas\, y será un lugar de encuentro entre las asociaciones de pacientes de los THTC en Latinoamérica y España. \n\nLema: Tejiendo redes.\nhashtag: #THTC2022\nweb: https://conectiva.lat/evento/THTC2022\n\n  \n 
URL:https://www.rarediseasesinternational.org/event/conectiva-thtc-event-2022-09/
CATEGORIES:Global Event
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T090000
DTEND;TZID=UTC:20220929T100000
DTSTAMP:20260506T032420
CREATED:20220927T214018Z
LAST-MODIFIED:20220927T214018Z
UID:10000300-1664442000-1664445600@www.rarediseasesinternational.org
SUMMARY:UHC Day campaign kick-off call
DESCRIPTION:Join us for a UHC Day campaign kick-off call on 29 September at 9 a.m. ET\, where we will reveal this year’s UHC Day theme\, share opportunities to engage with this year’s campaign\, and discuss exciting new #HealthForAll partnerships.
URL:https://www.rarediseasesinternational.org/event/uhc-day-campaign-kick-off-call-2022-09-29/
CATEGORIES:Global Event,Hosted by RDI Member
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T180000
DTEND;TZID=UTC:20220929T180000
DTSTAMP:20260506T032420
CREATED:20220927T205224Z
LAST-MODIFIED:20220927T205224Z
UID:10000298-1664474400-1664474400@www.rarediseasesinternational.org
SUMMARY:Science Webinar "Knowledge is power: The urgent need to internationalize databases for rare disease patients"
DESCRIPTION:There are multiple barriers to rare disease diagnosis\, including access to testing technologies\, availability of knowledgeable health care providers\, and lack of uniformity of the phenotype for a given genotype or disease-causing agent. These barriers significantly lengthen the time between detection of a rare disease and its diagnosis\, aptly called the diagnostic odyssey. \nThe collection and sharing of accurate\, standardized data are key priorities in shortening the diagnostic odyssey. \nDuring this webinar\, the panelists will: \n\nOutline current challenges in creating and maintaining global rare disease patient databases\nShare examples of current paradigms shown to be effective and beneficial\nDiscuss what is needed to improve current systems and make truly useful patient databases a reality.\n\nScience website:  https://www.science.org/content/webinar/knowledge-power-urgent-need-internationalize-databases-rare-disease-patients \nRegistration page:  https://view6.workcast.net/register?cpak=5263952065562539
URL:https://www.rarediseasesinternational.org/event/science-webinar-internationalize-database-2022-09-29/
CATEGORIES:Global Event
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