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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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BEGIN:VEVENT
DTSTART;TZID=UTC:20220921T170000
DTEND;TZID=UTC:20220921T190000
DTSTAMP:20260506T032256
CREATED:20220919T145205Z
LAST-MODIFIED:20220919T145205Z
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SUMMARY:Investing in Health Systems strengthening for Universal Health Coverage through a primary health care oriented approach
DESCRIPTION:The 3rd annual ministerial meeting on Universal Health Coverage: Investing in #health systems strengthening for UHC through a primary healthcare oriented approach.  \nONLINE
URL:https://www.rarediseasesinternational.org/event/uhc2030-who-event-2022-09-21/
CATEGORIES:Global Event
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ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220926
DTEND;VALUE=DATE:20220927
DTSTAMP:20260506T032256
CREATED:20220721T123247Z
LAST-MODIFIED:20220721T123247Z
UID:10000272-1664150400-1664236799@www.rarediseasesinternational.org
SUMMARY:International Human Gene Therapy Conference
DESCRIPTION:The aim of the International Human Gene Therapy Conference is to bring together all the key stakeholders interested in genetics and gene therapy to share and discuss advances and developments in these fields. Therefore we aimed at assisting academicians\, business executives\, researchers\, scientists\, manufacturers\, gene therapy companies\, communities\, and agencies to keep on new developments in their specific fields and to join forces in finding alternative solutions. \nGene Therapy Conference is a unique way to approach and encourage a dialogue between speakers and delegates through its well-planned agenda with a series of talks\, poster presentations\, panel discussions and networking events that will keep participants engaged in learning. This will help rising scientific queries and provide solutions for a smarter and more advanced future.
URL:https://www.rarediseasesinternational.org/event/international-human-gene-therapy-conference-2022/
LOCATION:Melbourne Convention and Exhibition Centre\, Melbourne\, Australia
CATEGORIES:Global Event
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220926T103000
DTEND;TZID=UTC:20220926T130000
DTSTAMP:20260506T032256
CREATED:20220919T140945Z
LAST-MODIFIED:20220919T140945Z
UID:10000287-1664188200-1664197200@www.rarediseasesinternational.org
SUMMARY:Enfermedades Raras: Presente y Futuro
DESCRIPTION: 
URL:https://www.rarediseasesinternational.org/event/enfermemdades-raras-presente-y-futuro-2022-09-26/
CATEGORIES:Global Event
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T000000
DTEND;TZID=UTC:20220930T000000
DTSTAMP:20260506T032256
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-19.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220928T083000
DTEND;TZID=UTC:20220928T093000
DTSTAMP:20260506T032256
CREATED:20220920T084936Z
LAST-MODIFIED:20220920T085044Z
UID:10000293-1664353800-1664357400@www.rarediseasesinternational.org
SUMMARY:Shining light into the black box: Examples of price transparency measures in non-health sectors - Webinar
DESCRIPTION:The webinar will consider some market characteristics (e.g. information asymmetry and market power) common in different sectors\, with a view to exploring thoughts about the roles of governments in managing the transparency of pharmaceutical prices.
URL:https://www.rarediseasesinternational.org/event/who-webinar-access-2022-09-28/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-16.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T090000
DTEND;TZID=UTC:20220929T100000
DTSTAMP:20260506T032256
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-27.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T180000
DTEND;TZID=UTC:20220929T180000
DTSTAMP:20260506T032256
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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