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X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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TZID:Europe/Paris
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T135212
CREATED:20230119T092108Z
LAST-MODIFIED:20230119T092127Z
UID:10000312-1675346400-1675349100@www.rarediseasesinternational.org
SUMMARY:Webinar - ¿Qué es una enfermedad rara?
DESCRIPTION:Un análisis en profundidad de la Descripción Operativa de las Enfermedades Raras\, aprobada internacionalmente\, una referencia común desarrollada por Rare Diseases International (RDI) en colaboración con un grupo de expertos y la Organización Mundial de la Salud. \nRegistro : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe
URL:https://www.rarediseasesinternational.org/event/whatisard/
CATEGORIES:Evento mundial
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-RD-Description-6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T135212
CREATED:20230119T092108Z
LAST-MODIFIED:20230119T092125Z
UID:10000310-1675346400-1675349100@www.rarediseasesinternational.org
SUMMARY:Webinaire - Qu'est-ce qu'une maladie rare ?
DESCRIPTION:Une plongée en profondeur dans la description opérationnelle des maladies rares approuvée au niveau international\, une référence commune élaborée par Rare Diseases International (RDI) en collaboration avec un groupe d’experts et l’Organisation mondiale de la santé. \nRegistre : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe
URL:https://www.rarediseasesinternational.org/event/whatisard/
CATEGORIES:Événement mondial
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-RD-Description-6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T135212
CREATED:20230119T092108Z
LAST-MODIFIED:20230119T092125Z
UID:10000311-1675346400-1675349100@www.rarediseasesinternational.org
SUMMARY:Webinar - O que é uma Doença Rara
DESCRIPTION:Um mergulho profundo na Descrição Operacional das Doenças Raras aprovada internacionalmente\, uma referência comum desenvolvida pela Rare Diseases InternationalRDI) trabalhando com um painel de peritos e colaborando com a Organização Mundial de Saúde. \nRegisto : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe
URL:https://www.rarediseasesinternational.org/event/whatisard/
CATEGORIES:Evento Global
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-RD-Description-6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T135212
CREATED:20230119T092108Z
LAST-MODIFIED:20230119T092108Z
UID:10000309-1675346400-1675349100@www.rarediseasesinternational.org
SUMMARY:Webinar - What is a Rare Disease
DESCRIPTION:A deep-dive into the internationally endorsed Operational Description of Rare Diseases\, a common reference developed by Rare Diseases International (RDI) working with an expert panel and collaborating with the World Health Organization. \nRegister : https://us02web.zoom.us/meeting/register/tZEsdeGqrj0tE9f21OLViF6A6ylP-FlWVWYe
URL:https://www.rarediseasesinternational.org/event/whatisard/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-RD-Description-6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T135212
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-5-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T135212
CREATED:20220510T144019Z
LAST-MODIFIED:20221125T170124Z
UID:10000236-1671040800-1671046200@www.rarediseasesinternational.org
SUMMARY:La defensa de la hemofilia en la serie 2022
DESCRIPTION:Únase a la última sesión de la serie sobre “Defensa de la Hemofilia” : \n“Crear un camino que no deje a nadie atrás : consideraciones políticas éticas y realistas para el futuro de la atención a la hemofilia” \n\n \n \n\n\n\n\n14 de diciembre de 2022\, 10-11:30 h. ET \n\nRegístrese gratuitamente : http://bit.ly/3VbjxgU
URL:https://www.rarediseasesinternational.org/event/serie-de-promocion-de-la-hemofilia-2022-en-linea/
CATEGORIES:Evento mundial
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-5-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T135212
CREATED:20220510T144019Z
LAST-MODIFIED:20221125T170123Z
UID:10000234-1671040800-1671046200@www.rarediseasesinternational.org
SUMMARY:Série " Plaidoyer en faveur de l'hémophilie 2022
DESCRIPTION:Participez à la dernière session de la série sur la “défense des intérêts de l’hémophilie” : \n“Crafting a Path that Leaves No One Behind : Ethical and realistic policy considerations for the future of hemophilia care” (Créer un chemin qui ne laisse personne de côté : considérations éthiques et politiques réalistes pour l’avenir des soins de l’hémophilie). \n\n \n \n\n\n\n\n14 décembre 2022\, 10 h à 11 h 30 ET \n\nInscrivez-vous gratuitement : http://bit.ly/3VbjxgU
URL:https://www.rarediseasesinternational.org/event/serie-plaidoyer-en-faveur-de-lhemophilie-2022/
CATEGORIES:Événement mondial
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-5-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T135212
CREATED:20220510T144019Z
LAST-MODIFIED:20221125T170123Z
UID:10000235-1671040800-1671046200@www.rarediseasesinternational.org
SUMMARY:Advocacia em hemofilia série 2022
DESCRIPTION:Junte-se à última sessão da série sobre “Advocacia para a Hemofilia” : \n“Crafting a Path that No One Behind : Ethical and realistic policy considerations for the future of hemoophilia care” \n\n \n \n\n\n\n\n14 de Dezembro de 2022\, 10-11:30 ET \n\nRegiste-se gratuitamente : http://bit.ly/3VbjxgU
URL:https://www.rarediseasesinternational.org/event/advocacia-na-hemofilia-serie-2022-online/
CATEGORIES:Evento Global
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-5-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221212T140000
DTEND;TZID=Europe/Paris:20221212T153000
DTSTAMP:20261023T135212
CREATED:20221124T084551Z
LAST-MODIFIED:20221124T084551Z
UID:10000305-1670853600-1670859000@www.rarediseasesinternational.org
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
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-5.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T135212
CREATED:20220721T090705Z
LAST-MODIFIED:20220721T090705Z
UID:10000258-1669852800-1670025600@www.rarediseasesinternational.org
SUMMARY:Academia de Doentes de Duchenne 2022
DESCRIPTION:Duchenne Patient Academy é uma colaboração entre a Organização Mundial de Duchenne e a Duchenne Data Foundation. O seu objectivo é inspirar e equipar os defensores dos doentes para se tornarem criadores de mudanças e construir um futuro melhor para as pessoas que vivem com distrofinopatias. Até agora\, já formou mais de 500 defensores de doentes DMD/BMD de 52 países. \nONLINE \nAs candidaturas para a Academia de Pacientes de Duchenne abrem em meados de Setembro.
URL:https://www.rarediseasesinternational.org/event/academia-de-doentes-de-duchenne-2022/
CATEGORIES:Hospedado por um membro da RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T135212
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T135212
CREATED:20220721T090705Z
LAST-MODIFIED:20220721T090705Z
UID:10000259-1669852800-1670025600@www.rarediseasesinternational.org
SUMMARY:Academia de Pacientes de Duchenne 2022
DESCRIPTION:La Academia de Pacientes de Duchenne es una colaboración entre la Organización Mundial de Duchenne y la Duchenne Data Foundation. Su objetivo es inspirar y equipar a los defensores de los pacientes para que se conviertan en agentes de cambio y construyan un futuro mejor para las personas que viven con distrofinopatías. Hasta ahora\, ha formado a más de 500 defensores de pacientes con DMD/BMD de 52 países. \nONLINE \nLas solicitudes para la Academia de Pacientes de Duchenne se abren a mediados de septiembre.
URL:https://www.rarediseasesinternational.org/event/academia-de-pacientes-de-duchenne-2022/
CATEGORIES:Organizado por un miembro de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T135212
CREATED:20220721T090705Z
LAST-MODIFIED:20220721T090705Z
UID:10000257-1669852800-1670025600@www.rarediseasesinternational.org
SUMMARY:Duchenne Patient Academy 2022
DESCRIPTION:La Duchenne Patient Academy est une collaboration entre la World Duchenne Organization et la Duchenne Data Foundation. Il vise à inspirer et à équiper les défenseurs des patients pour qu’ils deviennent des acteurs du changement et construisent un avenir meilleur pour les personnes vivant avec des dystrophinopathies. À ce jour\, il a formé plus de 500 défenseurs des patients atteints de DMD/BMD dans 52 pays. \nEN LIGNE \nLes candidatures pour la Duchenne Patient Academy sont ouvertes à la mi-septembre.
URL:https://www.rarediseasesinternational.org/event/duchenne-patient-academy-2022/
CATEGORIES:Accueilli par un membre de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221201
DTEND;VALUE=DATE:20221203
DTSTAMP:20261023T135212
CREATED:20220927T212431Z
LAST-MODIFIED:20220927T212431Z
UID:10000299-1669852800-1670025599@www.rarediseasesinternational.org
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221129
DTEND;VALUE=DATE:20221201
DTSTAMP:20261023T135212
CREATED:20221125T172113Z
LAST-MODIFIED:20221125T172113Z
UID:10000307-1669680000-1669852799@www.rarediseasesinternational.org
SUMMARY:Unite Annual Summit 2022
DESCRIPTION:On November 29 and 30\, the Global Heart Hub is bringing together patient representatives from all over the world for the second Unite Annual Summit. (Free Virtual Event) \nRegister : https://globalhearthub.org/unite-annual-summit/
URL:https://www.rarediseasesinternational.org/event/unite-annual-summit-2022-11-30/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221128T000000
DTEND;TZID=UTC:20221128T000000
DTSTAMP:20261023T135212
CREATED:20221122T151913Z
LAST-MODIFIED:20221122T151913Z
UID:10000304-1669593600-1669593600@www.rarediseasesinternational.org
SUMMARY:UNESCO-IBE\, Agrenska\, RDI\, - Improving inclusion of children living with a rare disease through curriculum transformation
DESCRIPTION:UNESCO-IBE is inviting you to join the webinar on “Improving inclusion of children living with a rare disease through curriculum transformation”\, co-organised with the Agrenska Foundation and Rare Diseases International and taking place on 28 November 2022 2:00-4:00 PM – Geneva time – (UTC+1). \nRegister here : https://unesco-org.zoom.us/webinar/register/WN_fLY9Q7WITmGJnL_F9OT09A \nMore info here : http://www.ibe.unesco.org/en/event/webinar-improving-inclusion-children-living-rare-disease-through-curriculum-transformation
URL:https://www.rarediseasesinternational.org/event/webnar-inclusion-children-rare-diseases-unesco-2022-11-28/
CATEGORIES:Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221125T000000
DTEND;TZID=UTC:20221127T000000
DTSTAMP:20261023T135212
CREATED:20220831T080616Z
LAST-MODIFIED:20220831T080616Z
UID:10000282-1669334400-1669507200@www.rarediseasesinternational.org
SUMMARY:Asia Pacific Alliance of Rare Disease Organisations (APARDO)\, Annual Conference
DESCRIPTION:The Asia Pacific Alliance of Rare Disease Organizations (APARDO) brings together patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers\, with the goals of sharing experiences and learning\, increasing the patient voice\, and working  together on common goals\, facilitating research\, sharing resources and best practices\, and collaborating on joint initiatives. \nSince 2021\, countries across the Asia Pacific (APAC) region were slowly returning to “normal” with events becoming “in-person” once again. \nThis year\, we are happy to announce seven planned sessions\, collaboration roundtables and networking opportunities over the course of two and a half days. \nLocation: In-Person Thailand
URL:https://www.rarediseasesinternational.org/event/apardo-annual-conference/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/08/APARDO-Events.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20261023T135212
CREATED:20220721T124846Z
LAST-MODIFIED:20220721T124846Z
UID:10000278-1669334400-1669507199@www.rarediseasesinternational.org
SUMMARY:RAREFESTO22
DESCRIPTION:GRATUITO para participar\, RAREfest22 é um festival de 2 dias inspirado nas doenças raras\, voltado para o público\, com palestras interactivas\, demonstrações e exibições\, filmes e arte mostrando ciência pioneira\, tecnologia visionária e organizações pioneiras\, melhorando vidas e trazendo esperança às pessoas afectadas por doenças raras. \nPARA OS PERITOS. PARA OS CURIOSOS. PARA TODAS AS IDADES. PARA TODOS. GRATUITAMENTE!
URL:https://www.rarediseasesinternational.org/event/rarefesto22/
LOCATION:The Guildhall  Market Square\, The Guildhall Market Square Cambridge\, Cambridge\, CB2 3QB\, United Kingdom
CATEGORIES:Evento Global,Hospedado por um membro da RDI,Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20261023T135212
CREATED:20220721T124846Z
LAST-MODIFIED:20220721T124846Z
UID:10000276-1669334400-1669507199@www.rarediseasesinternational.org
SUMMARY:RAREFEST22
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, 2-day rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations\, improving lives and bringing hope to those affected by rare conditions. \nFOR THE EXPERTS. FOR THE CURIOUS. FOR ALL AGES. FOR EVERYONE. FOR FREE!
URL:https://www.rarediseasesinternational.org/event/rarefest-22-2022-11/
LOCATION:The Guildhall  Market Square\, The Guildhall Market Square Cambridge\, Cambridge\, CB2 3QB\, United Kingdom
CATEGORIES:Global Event,Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20261023T135212
CREATED:20220721T124846Z
LAST-MODIFIED:20220721T124846Z
UID:10000279-1669334400-1669507199@www.rarediseasesinternational.org
SUMMARY:RAREFEST22
DESCRIPTION:RAREfest22 es un festival de dos días inspirado en las enfermedades raras que ofrece charlas interactivas\, demostraciones y exposiciones\, películas y arte que muestran la ciencia innovadora\, la tecnología visionaria y las organizaciones pioneras\, mejorando la vida y llevando esperanza a los afectados por enfermedades raras. \nPARA LOS EXPERTOS. PARA LOS CURIOSOS. PARA TODAS LAS EDADES. PARA TODOS. ¡GRATIS!
URL:https://www.rarediseasesinternational.org/event/rarefest22/
LOCATION:The Guildhall  Market Square\, The Guildhall Market Square Cambridge\, Cambridge\, CB2 3QB\, United Kingdom
CATEGORIES:Evento mundial,Hosted by RDI,Organizado por un miembro de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20261023T135212
CREATED:20220721T124846Z
LAST-MODIFIED:20220721T124846Z
UID:10000277-1669334400-1669507199@www.rarediseasesinternational.org
SUMMARY:RAREFEST22
DESCRIPTION:GRATUIT\, le RAREfest22 est un festival de deux jours\, orienté vers le public et inspiré par les maladies rares. Il propose des conférences interactives\, des démonstrations et des expositions\, des films et des œuvres d’art présentant des sciences révolutionnaires\, des technologies visionnaires et des organisations pionnières\, qui améliorent la vie des personnes atteintes de maladies rares et leur redonnent espoir. \nPOUR LES EXPERTS. POUR LES CURIEUX. POUR TOUS LES ÂGES. POUR TOUT LE MONDE. GRATUITEMENT !
URL:https://www.rarediseasesinternational.org/event/rarefest22/
LOCATION:The Guildhall  Market Square\, The Guildhall Market Square Cambridge\, Cambridge\, CB2 3QB\, United Kingdom
CATEGORIES:Accueilli par un membre de RDI,Événement mondial,Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20261023T135212
CREATED:20220721T120524Z
LAST-MODIFIED:20220721T120524Z
UID:10000270-1669125600-1669154400@www.rarediseasesinternational.org
SUMMARY:3a. Dados FAIR internacionais 'em visita' para Duchenne & Outras Doenças Raras
DESCRIPTION:Pela primeira vez\, a Organização Mundial Duchenne associar-se-á a RaDiOrg Doenças Raras na Bélgica e a SMA Europa na Alemanha para formar uma rede mais ampla de aproximadamente 160 organizações de doentes\, todas interessadas em como os princípios FAIR poderiam fazer a diferença na optimização da utilização dos dados dos doentes.
URL:https://www.rarediseasesinternational.org/event/3a-dados-fair-internacionais-em-visita-para-duchenne-outras-doencas-raras/
CATEGORIES:Hospedado por um membro da RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20261023T135212
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20261023T135212
CREATED:20220721T120524Z
LAST-MODIFIED:20220721T120524Z
UID:10000271-1669125600-1669154400@www.rarediseasesinternational.org
SUMMARY:3e visite internationale de données FAIR pour la maladie de Duchenne et autres maladies rares
DESCRIPTION:Pour la première fois\, la World Duchenne Organization s’associera à RaDiOrg Rare Diseases en Belgique et à SMA Europe en Allemagne pour former un réseau plus large d’environ 160 organisations de patients\, toutes intéressées par la manière dont les principes FAIR pourraient faire la différence pour optimiser l’utilisation des données des patients.
URL:https://www.rarediseasesinternational.org/event/3e-visite-internationale-de-donnees-fair-pour-la-maladie-de-duchenne-et-autres-maladies-rares/
CATEGORIES:Accueilli par un membre de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20261023T135212
CREATED:20220721T120524Z
LAST-MODIFIED:20220721T120524Z
UID:10000269-1669125600-1669154400@www.rarediseasesinternational.org
SUMMARY:Tercera "visita" internacional de datos FAIR para Duchenne y otras enfermedades raras
DESCRIPTION:Por primera vez\, la Organización Mundial de Duchenne se asociará con RaDiOrg Rare Diseases en Bélgica y SMA Europe en Alemania para formar una red más amplia de aproximadamente 160 Organizaciones de Pacientes\, todas ellas interesadas en cómo los principios FAIR podrían marcar la diferencia en la optimización del uso de los datos de los pacientes.
URL:https://www.rarediseasesinternational.org/event/tercera-visita-internacional-de-datos-fair-para-duchenne-y-otras-enfermedades-raras/
CATEGORIES:Organizado por un miembro de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221117T000000
DTEND;TZID=Europe/Paris:20221117T000000
DTSTAMP:20261023T135212
CREATED:20221116T101610Z
LAST-MODIFIED:20221116T101610Z
UID:10000303-1668643200-1668643200@www.rarediseasesinternational.org
SUMMARY:Cobertura Universal de Salud para las enfermedades raras: Preguntas clave
DESCRIPTION:Taller previo a la conferencia\n17 de noviembre de 2022\n11:00-12:15 GMT-3 / 15:00-16:15 CET\nVirtual event → Haga clic aquí para participar : bit.ly/3O8nnVP (no es necesario registrarse antes) \n¡Complete la encuesta antes del taller! → https://forms.gle/z9RL5vSeUftpdeAL7
URL:https://www.rarediseasesinternational.org/event/cus-enfermedades-raras-2022-11-17/
CATEGORIES:Hosted by RDI,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221116T000000
DTEND;TZID=UTC:20221119T000000
DTSTAMP:20261023T135212
CREATED:20220914T113455Z
LAST-MODIFIED:20220914T113455Z
UID:10000286-1668556800-1668816000@www.rarediseasesinternational.org
SUMMARY:International Scientific Conference on Albinism (ISCA)
DESCRIPTION:ISCA is a unique scientific conference organized by the Global Albinism Alliance and shaped to be a global forum to improve the health of those with albinism. \n(Online Conference)
URL:https://www.rarediseasesinternational.org/event/isca-2022/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-4.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221114
DTEND;VALUE=DATE:20221118
DTSTAMP:20261023T135212
CREATED:20220919T162247Z
LAST-MODIFIED:20220919T163928Z
UID:10000291-1668384000-1668729599@www.rarediseasesinternational.org
SUMMARY:World Orphan Drug Congress Europe 2022 (WODC)
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/wodc-europe-2022/
LOCATION:MELIA SITGES HOTEL\, SITGES\, Barcelona\, Spain
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-14.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221101
DTEND;VALUE=DATE:20221102
DTSTAMP:20261023T135212
CREATED:20220923T095305Z
LAST-MODIFIED:20220923T095305Z
UID:10000295-1667260800-1667347199@www.rarediseasesinternational.org
SUMMARY:World Acromegaly Awareness Day 2022
DESCRIPTION:Annual Awareness Day on November 1st\, to raise awareness for patients diagnosed with Acromegaly. \nThe goal is to help people with this rare endocrine disease get the timely diagnosis and effective treatment they need and deserve.
URL:https://www.rarediseasesinternational.org/event/world-acromegaly-day-2022611-1/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-18.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221025
DTEND;VALUE=DATE:20221026
DTSTAMP:20261023T135212
CREATED:20220928T142118Z
LAST-MODIFIED:20220928T142118Z
UID:10000301-1666656000-1666742399@www.rarediseasesinternational.org
SUMMARY:World Spina Bifida and Hydrocephalus Day 2022
DESCRIPTION:The International Federation for Spina Bifida and Hydrocephalus warmly INVITES persons with Spina Bifida and Hydrocephalus from all over the world as well as all interested parties to celebrate the 10th edition of the World Spina Bifida and Hydrocephalus Day (WSBHD) on the topic of “Elevate Your Voice” on October 25 2022. Various activities will take place around the WSBHD22 throughout the month of October. All events\, materials\, information and latest updates are available on www.worldspinabifidahydrocephalusday.com
URL:https://www.rarediseasesinternational.org/event/world-spina-bifida-and-hydrocephalus-day-2022-10-25/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-28.png
END:VEVENT
END:VCALENDAR