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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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DTSTART:20230312T070000
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DTSTART:20231105T060000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240206T150000
DTEND;TZID=UTC:20240206T160000
DTSTAMP:20261023T073647
CREATED:20240126T133414Z
LAST-MODIFIED:20240202T184708Z
UID:10000350-1707231600-1707235200@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Asia Pacific
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback. \nAgenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/members-regional-webinar-asia-pacific/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Asia-Regional-Webinars.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240206T150000
DTEND;TZID=UTC:20240206T160000
DTSTAMP:20261023T073647
CREATED:20240126T133253Z
LAST-MODIFIED:20240126T133253Z
UID:10000349-1707231600-1707235200@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Europe
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback.Agenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/members-regional-webinar-europe/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Europe-Regional-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240206T140000
DTEND;TZID=UTC:20240206T170000
DTSTAMP:20261023T073647
CREATED:20240126T131805Z
LAST-MODIFIED:20240126T133136Z
UID:10000348-1707228000-1707238800@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Africa
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback. \nAgenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/regional-members-webinar-africa/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Regional-Webinars-Africa.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240205T160000
DTEND;TZID=UTC:20240205T170000
DTSTAMP:20261023T073647
CREATED:20240126T131322Z
LAST-MODIFIED:20240126T131322Z
UID:10000347-1707148800-1707152400@www.rarediseasesinternational.org
SUMMARY:Members Regional Webinar: Americas
DESCRIPTION:The purpose of this webinar is to introduce you to the new RDI team\, present our latest action plan\, and seek your valuable feedback. \nAgenda: \n\nIntroduction of the RDI Team: Get to know the individuals behind RDI\nPresentation of the RDI Action Plan: We will share our strategic action plan outlining our goals\, objectives\, and the roadmap for the coming months\nConsultation by Region: Your input matters. We will open the floor for discussion\, questions and feedback
URL:https://www.rarediseasesinternational.org/event/members-regional-webinar-americas/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Americas-Regional-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231030
DTEND;VALUE=DATE:20231103
DTSTAMP:20261023T073647
CREATED:20230726T112923Z
LAST-MODIFIED:20230726T112923Z
UID:10000338-1698624000-1698969599@www.rarediseasesinternational.org
SUMMARY:World Orphan Drug Congress (WODC) Europe 2023
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/world-orphan-drug-congress-wodc-europe-2023/
LOCATION:Fira Barcelona Montjuic\, Barcelona\, Spain
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/07/WODCEU-e1690370856364.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231030
DTEND;VALUE=DATE:20231103
DTSTAMP:20261023T073647
CREATED:20230726T105751Z
LAST-MODIFIED:20230927T072703Z
UID:10000330-1698624000-1698969599@www.rarediseasesinternational.org
SUMMARY:RDI Membership Event
DESCRIPTION:This will be the first gathering of the RDI Global Patient Community since Pre-COVID19. While RDI and our members have continued to collaborate to advance rare disease at global and local and to support one another\, we have missed the personal contact.\nPlease join us in from 30 October to 2 November 2023 in Barcelona\, Spain. \nThanks to the generous support of the World Orphan Drug Congress (WODC) Europe\, RDI Members can take part in a number of valuable activities: \n\nRDI Members-Only Meeting  (30 October from 2 PM)\nFull registration to attend all WODC Europe session (31 Oct – 2 Nov)\nParticipation in the WODC Europe designated track of RDI patient-focused\, patient-led sessions (2 Nov am/pm)\n\nWe have compiled some travel information for members attending the event here.
URL:https://www.rarediseasesinternational.org/event/rdi-membership-event/
LOCATION:Fira Barcelona Montjuic\, Barcelona\, Spain
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2023/07/Logo-Rare-Diseases-International-RGB.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230921T131500
DTEND;TZID=America/New_York:20230921T143000
DTSTAMP:20261023T073647
CREATED:20230726T111331Z
LAST-MODIFIED:20230926T191322Z
UID:10000334-1695302100-1695306600@www.rarediseasesinternational.org
SUMMARY:RDI Side Event UN High Level Meeting on UHC
DESCRIPTION:RDI\, in partnership with the Spanish Mission to the UN and the Swedish Mission to the UN\, will hold a formal side event during the United Nations High Level Meeting on Universal Health Coverage in New York City on September 21th: “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind”. \nThe event will feature high-level participation\, including His Excellency Mr Aurélien Rousseau\, the French Minister of Health and Prevention\, Her Excellency Mrs Acko Ackenberg Johansson\, Swedish Minister of Public Health Care\, and Her Excellency Dr Hanan Mohammed Al-Kuwari\, Minister of Public Health for the State of Qatar. Her Majesty The Queen Silvia of Sweden will also participate in the event via a video statement. \nThis event is the continuation of years-long advocacy by RDI and its partners. Since the Political Declaration on UHC in 2019\, in which rare diseases are specifically mentioned\, and the milestone UN Resolution on “Addressing the challenges of persons living with a rare disease and their families”\, RDI has solidified the key tenets of UHC for Rare Diseases through regional consultations. \nThe objective is to highlight national successful actions implementing UHC for rare diseases\, to explore methods to reduce the out-of-pocket expenses shouldered by PLWRD and their families\, and to draw some quick wins for policy makers and stakeholders to implement. \nThe event will be in a hybrid format. \nFor more information\, please see the event page.
URL:https://www.rarediseasesinternational.org/event/rdi-side-event-un-high-level-meeting-on-uhc/
LOCATION:United Nations Headquarters\, Conference Room 7\, 405 E 45th St\, New York City\, NY\, 10017\, United States
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2023/07/Logo-Rare-Diseases-International-RGB.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230717
DTEND;VALUE=DATE:20230721
DTSTAMP:20261023T073647
CREATED:20220919T165705Z
LAST-MODIFIED:20220919T165705Z
UID:10000292-1689552000-1689897599@www.rarediseasesinternational.org
SUMMARY:WOMEN DELIVER 2023 CONFERENCE
DESCRIPTION:The Women Deliver 2023 Conference (WD2023) will take place in-person in Kigali\, Rwanda\, as well as virtually\, from 17-20 July 2023. As one of the largest multi-sectoral convenings to advance gender equality\, WD2023 will convene 6\,000 people in Kigali and 200\,000+ people online through the virtual Conference and six-month Global Dialogue leading up to the Conference.
URL:https://www.rarediseasesinternational.org/event/wd2023-2023-07/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-15-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230609T000000
DTEND;TZID=Europe/Paris:20230610T000000
DTSTAMP:20261023T073647
CREATED:20221227T092004Z
LAST-MODIFIED:20221227T092004Z
UID:10000308-1686268800-1686355200@www.rarediseasesinternational.org
SUMMARY:BALANCING LIFE WITH OI
DESCRIPTION:The Balancing Life with OI is a meeting that will take place in Stockholm\, Sweden\, on 9 to 10 June 2023. Registration is now open. OIFE is organising a topical meeting on the neglected subject of the causes\, assessment and management of pain in OI and its impact on physical and mental health\, sleep\, fatigue\, mobility\, relationships and work/life balance.
URL:https://www.rarediseasesinternational.org/event/wd2023-2023-07-2/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/12/OIFE-Event-2023jpg.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230502T080000
DTEND;TZID=UTC:20230502T170000
DTSTAMP:20261023T073647
CREATED:20230502T134314Z
LAST-MODIFIED:20230502T134314Z
UID:10000322-1683014400-1683046800@www.rarediseasesinternational.org
SUMMARY:World Orphan Drug Congress USA 2023
DESCRIPTION:World Orphan Drug Congress USA 2023
URL:https://www.rarediseasesinternational.org/event/world-orphan-drug-congress-usa-2023/
LOCATION:May 23 -25; Washington DC\, USA
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2023/05/image-12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230315
DTEND;VALUE=DATE:20230319
DTSTAMP:20261023T073647
CREATED:20230119T093331Z
LAST-MODIFIED:20230119T093343Z
UID:10000315-1678838400-1679183999@www.rarediseasesinternational.org
SUMMARY:Congresso RE(ACT) & Conferência IRDiRDC
DESCRIPTION:A Fundação BLACKSWAN e o IRDiRC\, o Consórcio Internacional de Investigação das Doenças Raras\, acolherão o evento conjunto sobre investigação de doenças raras\, desenvolvimento de medicamentos\, acesso e envolvimento dos doentes.
URL:https://www.rarediseasesinternational.org/event/react2023/
CATEGORIES:Evento Global
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-REACT-Congress6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230315
DTEND;VALUE=DATE:20230319
DTSTAMP:20261023T073647
CREATED:20230119T093331Z
LAST-MODIFIED:20230119T093331Z
UID:10000313-1678838400-1679183999@www.rarediseasesinternational.org
SUMMARY:RE(ACT) Congress & IRDiRDC Conference
DESCRIPTION:The BLACKSWAN Foundation and IRDiRC\, the International Rare Diseases Research Consortium\, will host the joint event on rare disease research\, drug development\, access and patient engagement.
URL:https://www.rarediseasesinternational.org/event/react2023/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-REACT-Congress6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230315
DTEND;VALUE=DATE:20230319
DTSTAMP:20261023T073647
CREATED:20230119T093331Z
LAST-MODIFIED:20230119T093342Z
UID:10000316-1678838400-1679183999@www.rarediseasesinternational.org
SUMMARY:Congreso RE(ACT) y Conferencia IRDiRDC
DESCRIPTION:La Fundación BLACKSWAN y el IRDiRC\, Consorcio Internacional de Investigación de Enfermedades Raras\, serán los anfitriones de este acto conjunto sobre investigación de enfermedades raras\, desarrollo de medicamentos\, acceso y participación de los pacientes.
URL:https://www.rarediseasesinternational.org/event/react2023/
CATEGORIES:Evento mundial
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-REACT-Congress6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230315
DTEND;VALUE=DATE:20230319
DTSTAMP:20261023T073647
CREATED:20230119T093331Z
LAST-MODIFIED:20230119T093342Z
UID:10000314-1678838400-1679183999@www.rarediseasesinternational.org
SUMMARY:Congrès RE(ACT) & Conférence IRDiRDC
DESCRIPTION:La Fondation BLACKSWAN et l’IRDiRC\, le Consortium international de recherche sur les maladies rares\, accueilleront l’événement conjoint sur la recherche sur les maladies rares\, le développement de médicaments\, l’accès et l’engagement des patients.
URL:https://www.rarediseasesinternational.org/event/react2023/
CATEGORIES:Événement mondial
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/01/Website-Event-REACT-Congress6.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230306
DTEND;VALUE=DATE:20230309
DTSTAMP:20261023T073647
CREATED:20221108T145845Z
LAST-MODIFIED:20221108T145845Z
UID:10000302-1678060800-1678319999@www.rarediseasesinternational.org
SUMMARY:Third International Summit on Human Genome Editing
DESCRIPTION:The Third International Summit on Human Genome Editing is taking place 6-8 March 2023 at the Francis Crick Institute\, London UK and registration is now open for attendance either in person or online. The summit will build on previous events held in Washington\, DC (2015) and Hong Kong (2018)\, continuing the global dialogue on somatic and germline human genome editing. Major themes for discussion include results from the first somatic genome editing clinical trials\, developments in both somatic and heritable genome editing tools and the social and ethical considerations these scientific developments entail. The three-day event is being organised by the Royal Society\, the UK Academy of Medical Sciences\, the US National Academies of Sciences and Medicine and The World Academy of Sciences. More details\, including the agenda and speakers\, and registration can be found on the Summit’s event page. \n  \nRegister : https://royalsociety.org/science-events-and-lectures/2023/03/2023-human-genome-editing-summit/
URL:https://www.rarediseasesinternational.org/event/international-summit-on-human-genome-editing-2023-03/
LOCATION:The Francis Crick Institute\, London UK\, London\, United Kingdom
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/11/Website-Event-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230302
DTSTAMP:20261023T073647
CREATED:20230214T103351Z
LAST-MODIFIED:20230214T103351Z
UID:10000318-1677542400-1677715199@www.rarediseasesinternational.org
SUMMARY:3RD INTERNATIONAL RARE DISEASES CONFERENCE 2023: GREEK CHAPTER
DESCRIPTION:The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG)\, “95” Rare Alliance Greece and Boussias\, following the World Rare Disease Day 2023\, will take place on February 28 & March 1\, 2023.
URL:https://www.rarediseasesinternational.org/event/greek-international-rare-diseases/
LOCATION:Comment la participation des patients fait la différence dans l’ETS : Webinaire PCIG
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/02/International-Conference-on-Rare-Diseases-GREEK.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230225
DTEND;VALUE=DATE:20230227
DTSTAMP:20261023T073647
CREATED:20221125T154627Z
LAST-MODIFIED:20221125T163216Z
UID:10000306-1677283200-1677455999@www.rarediseasesinternational.org
SUMMARY:1st International UAE Rare Disease Society Congress
DESCRIPTION:For the First time\, the 1st International UAE Rare Disease Society Congress aims to gather all the patients’ community who is suffering with rare diseases conditions with the help of our genetic scientists\, clinical geneticists and different subspecialties for rare disease. \nThis one-of-a-kind event will bring together important clinical practitioners\, academics\, and experts to debate community concerns both locally and worldwide. \n  \nIN-PERSON from February 25-26\, 2023. \n  \nRegister here : https://rarediseases.ae/uae-rare-disease-society/
URL:https://www.rarediseasesinternational.org/event/international-uae-rare-disease-society-congress-2023-02/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230209
DTEND;VALUE=DATE:20230210
DTSTAMP:20261023T073647
CREATED:20230206T095321Z
LAST-MODIFIED:20230206T095414Z
UID:10000317-1675900800-1675987199@www.rarediseasesinternational.org
SUMMARY:FORO DE ALTO NIVEL X ENCUENTRO/CONGRESO IBEROAMERICANO DE ENFERMEDADES RARAS\, HUÉRFANAS O POCO FRECUENTES
DESCRIPTION:Ibero-American Rare Diseases Alliance (ALIBER) Annual Conference\, on 9 February 2023 in Costa Rica. See event agenda.
URL:https://www.rarediseasesinternational.org/event/aliber2023/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/02/ALIBER-Conference-Image-2023.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T073647
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:20261023T073647
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:20261023T073647
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:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20261023T073647
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:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T073647
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:20261023T073647
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T073647
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221214T180000
DTEND;TZID=Europe/Paris:20221214T193000
DTSTAMP:20261023T073647
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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20221212T140000
DTEND;TZID=Europe/Paris:20221212T153000
DTSTAMP:20261023T073647
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:20261023T073647
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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T073647
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221201T000000
DTEND;TZID=UTC:20221203T000000
DTSTAMP:20261023T073647
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
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END:VCALENDAR