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METHOD:PUBLISH
X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20220101T000000
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TZID:Europe/Paris
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20220327T010000
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TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20221030T010000
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TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20220327T010000
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DTSTART:20221030T010000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20261023T153217
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:20261023T153217
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:20261023T153217
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:20261023T153217
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:20261023T153217
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:20261023T153217
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=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20261023T153217
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=Europe/Paris:20221117T000000
DTEND;TZID=Europe/Paris:20221117T000000
DTSTAMP:20261023T153217
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:20261023T153217
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:20261023T153217
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:20261023T153217
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:20261023T153217
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221015
DTEND;VALUE=DATE:20221017
DTSTAMP:20261023T153217
CREATED:20220919T150550Z
LAST-MODIFIED:20220919T150550Z
UID:10000290-1665792000-1665964799@www.rarediseasesinternational.org
SUMMARY:The 1st World Patients Conference in Rome (Italy)
DESCRIPTION:WPA’s 1st World Patients Conference will provide patients the platform and opportunity to network\, exchange information\, share experiences\, learn from each other\, raise your voice\, and advocate for patients cause internationally.
URL:https://www.rarediseasesinternational.org/event/world-patients-conference-rome-2022-10/
LOCATION:Crowne Plaza Rome – St. Peter’s\, Italy
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-13.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20221012T140000
DTEND;TZID=Europe/Helsinki:20221012T150000
DTSTAMP:20261023T153217
CREATED:20220922T161142Z
LAST-MODIFIED:20220922T161142Z
UID:10000294-1665583200-1665586800@www.rarediseasesinternational.org
SUMMARY:#ACT4RARE Toolkit - NEW UN Resolution Toolkit Launch (ONLINE)
DESCRIPTION:The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now what? How can you use it? How can you tell you country’s decision makers to act? \nJoin us for a presentation of the #ACT4RARE Toolkit to raise awareness and call action in the UN Resolution. \nThe #ACT4RARE toolkit will include :\n– A summary of the actions all countries have agreed to take\n– Template letters for policymakers\n– Social Media kit – with post images and GIFs\nAnd more !
URL:https://www.rarediseasesinternational.org/event/act4rar-toolkit-launch-2022-10-12/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-17.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221012
DTEND;VALUE=DATE:20221016
DTSTAMP:20261023T153217
CREATED:20220721T094439Z
LAST-MODIFIED:20220721T094439Z
UID:10000266-1665532800-1665878399@www.rarediseasesinternational.org
SUMMARY:XVII Reunião Global de Doentes do IPOPI 2022 (Presencial)
DESCRIPTION:As Organizações Nacionais Membros do IPOPI estão todas convidadas para o XVII Encontro Global de Doentes em Gotemburgo\, Suécia\, 12-15 de Outubro de 2022! Junte-se a nós para uma oportunidade de finalmente se encontrar pessoalmente com a comunidade global PID\, e desfrutar de três dias de sessões educacionais apresentando os últimos avanços médicos sobre imunodeficiências primárias\, bem como discussões frutuosas e oportunidades de desenvolvimento de competências.
URL:https://www.rarediseasesinternational.org/event/xvii-reuniao-global-de-doentes-do-ipopi-2022-presencial/
LOCATION:Gothenburg\, Sweden
CATEGORIES:Hospedado por um membro da RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221012
DTEND;VALUE=DATE:20221016
DTSTAMP:20261023T153217
CREATED:20220721T094439Z
LAST-MODIFIED:20220721T113906Z
UID:10000264-1665532800-1665878399@www.rarediseasesinternational.org
SUMMARY:IPOPI’s XVII Global Patients’ Meeting 2022 (In-Person)
DESCRIPTION:IPOPI‘s National Member Organisations are all invited to the XVII Global Patients’ Meeting in Gothenburg\, Sweden\, 12-15 October 2022! Join us for an opportunity to finally meet up with the global PID community in person\, and enjoy three days of educational sessions presenting the latest medical advances on primary immunodeficiencies\, as well as fruitful discussions and skills-building opportunities.
URL:https://www.rarediseasesinternational.org/event/ipopi-global-patients-meeting-2022-10-12/
LOCATION:Gothenburg\, Sweden
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221012
DTEND;VALUE=DATE:20221016
DTSTAMP:20261023T153217
CREATED:20220721T094439Z
LAST-MODIFIED:20220721T094439Z
UID:10000267-1665532800-1665878399@www.rarediseasesinternational.org
SUMMARY:XVII Reunión Mundial de Pacientes de IPOPI 2022 (en persona)
DESCRIPTION:Las Organizaciones Nacionales Miembros de IPOPI están invitadas al XVII Encuentro Mundial de Pacientes en Gotemburgo\, Suecia\, del 12 al 15 de octubre de 2022. Únase a nosotros para tener la oportunidad de reunirse por fin con la comunidad mundial de la IDP en persona\, y disfrutar de tres días de sesiones educativas en las que se presentarán los últimos avances médicos sobre las inmunodeficiencias primarias\, así como de fructíferos debates y oportunidades de adquirir conocimientos.
URL:https://www.rarediseasesinternational.org/event/xvii-reunion-mundial-de-pacientes-de-ipopi-2022-en-persona/
LOCATION:Gothenburg\, Sweden
CATEGORIES:Organizado por un miembro de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221012
DTEND;VALUE=DATE:20221016
DTSTAMP:20261023T153217
CREATED:20220721T094439Z
LAST-MODIFIED:20220721T094439Z
UID:10000265-1665532800-1665878399@www.rarediseasesinternational.org
SUMMARY:XVIIe réunion mondiale des patients de l'IPOPI 2022 (en personne)
DESCRIPTION:Les organisations nationales membres de l’IPOPI sont toutes invitées à la XVIIe réunion mondiale des patients à Göteborg\, en Suède\, du 12 au 15 octobre 2022 ! Rejoignez-nous pour avoir enfin l’occasion de rencontrer en personne la communauté mondiale des PID\, et profitez de trois jours de sessions éducatives présentant les dernières avancées médicales sur les immunodéficiences primaires\, ainsi que de discussions fructueuses et d’opportunités de renforcement des compétences.
URL:https://www.rarediseasesinternational.org/event/xviie-reunion-mondiale-des-patients-de-lipopi-2022-en-personne/
LOCATION:Gothenburg\, Sweden
CATEGORIES:Accueilli par un membre de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20261023T153217
CREATED:20220228T124144Z
LAST-MODIFIED:20220722T141144Z
UID:10000172-1665360000-1665446399@www.rarediseasesinternational.org
SUMMARY:Reutilización de medicamentos para enfermedades raras 2022
DESCRIPTION:Drug Repurposing for Rare Diseases destaca el papel que puede desempeñar la readaptación de medicamentos para reducir el coste y acelerar el desarrollo de tratamientos para enfermedades raras. \nUn evento único por su enfoque colaborativo y de múltiples partes interesadas\, que reúne a grupos de pacientes\, investigadores y profesionales de la industria para mostrar excelentes ejemplos de reutilización de rarezas.
URL:https://www.rarediseasesinternational.org/event/dia-de-las-enfermedades-raras-en-la-exposicion-universal/
LOCATION:America Square Conference Centre\, London\, 17\, One Crosswall\, America Square\,\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Organizado por un miembro de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/02/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20261023T153217
CREATED:20220228T124144Z
LAST-MODIFIED:20220721T130025Z
UID:10000170-1665360000-1665446399@www.rarediseasesinternational.org
SUMMARY:Drug Repurposing for Rare Diseases 2022
DESCRIPTION:Drug Repurposing for Rare Diseases highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. \nAn event unique in its collaborative and multi-stakeholder focus\, we bring patient groups\, researchers and industry professionals together to showcase excellent examples of rare repurposing.
URL:https://www.rarediseasesinternational.org/event/drug-repurposing-for-rare-diseases-2022/
LOCATION:America Square Conference Centre\, London\, 17\, One Crosswall\, America Square\,\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/02/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20261023T153217
CREATED:20220228T124144Z
LAST-MODIFIED:20220722T141045Z
UID:10000173-1665360000-1665446399@www.rarediseasesinternational.org
SUMMARY:Reprogrammation des médicaments pour les maladies rares 2022
DESCRIPTION:Drug Repurposing for Rare Diseases met en évidence le rôle que la reconversion des médicaments peut jouer dans la réduction du coût et l’accélération du développement des traitements des maladies rares. \nCet événement\, unique en son genre par son caractère collaboratif et multipartite\, réunit des groupes de patients\, des chercheurs et des professionnels de l’industrie pour présenter d’excellents exemples de reconversion de produits rares.
URL:https://www.rarediseasesinternational.org/event/journee-des-maladies-rares-a-lexposition-universelle/
LOCATION:America Square Conference Centre\, London\, 17\, One Crosswall\, America Square\,\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Accueilli par un membre de RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/02/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20261023T153217
CREATED:20220228T124144Z
LAST-MODIFIED:20220722T141119Z
UID:10000171-1665360000-1665446399@www.rarediseasesinternational.org
SUMMARY:Reposição de Medicamentos para Doenças Raras 2022
DESCRIPTION:A Repurpação de Medicamentos para Doenças Raras destaca o papel que a repurpação de medicamentos pode desempenhar na redução do custo e na aceleração do desenvolvimento de tratamentos de doenças raras. \nUm evento único no seu enfoque colaborativo e multi-stakeholder\, reunimos grupos de doentes\, investigadores e profissionais da indústria para mostrar excelentes exemplos de raras reações.
URL:https://www.rarediseasesinternational.org/event/dia-das-doencas-raras-na-exposicao-mundial/
LOCATION:America Square Conference Centre\, London\, 17\, One Crosswall\, America Square\,\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Hospedado por um membro da RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/02/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221007
DTEND;VALUE=DATE:20221010
DTSTAMP:20261023T153217
CREATED:20220923T153052Z
LAST-MODIFIED:20220923T153611Z
UID:10000297-1665100800-1665359999@www.rarediseasesinternational.org
SUMMARY:2022 Rare Neuroimmune Disorders Symposium
DESCRIPTION:The RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind. On October 7 – 9\, 2022\, the RNDS will host a hybrid event—participants can choose to attend either in-person\, virtually via online streaming\, or partly in-person and partly online. An online pre-RNDS will be hosted on September 9\, 2022\, to dive deeper into topics related to your rare neuroimmune disorder and start meeting others that will attend the RNDS in October. We remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions. For the online-only registration: https://hopin.com/events/2022-rnds. \n  \nOnline and In person
URL:https://www.rarediseasesinternational.org/event/rare-neuroimmune-disorders-symposium-2022/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-21.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T180000
DTEND;TZID=UTC:20220929T180000
DTSTAMP:20261023T153217
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-25.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T090000
DTEND;TZID=UTC:20220929T100000
DTSTAMP:20261023T153217
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220928T083000
DTEND;TZID=UTC:20220928T093000
DTSTAMP:20261023T153217
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:20220927T140000
DTEND;TZID=UTC:20220927T150000
DTSTAMP:20261023T153217
CREATED:20220909T141529Z
LAST-MODIFIED:20220909T141529Z
UID:10000284-1664287200-1664290800@www.rarediseasesinternational.org
SUMMARY:Webinar on ICD-11 use for Rare Diseases
DESCRIPTION:As part of WHO ICD-11 webinar series\, the Classifications and Terminologies Unit in collaboration with the Healthier Populations Division at WHO and Rare Diseases International is organising an ICD-11 webinar that will be held on September 27th\, 2022. ONLINE. \nAn Event co-organised by the WHO and Rare Diseases International.
URL:https://www.rarediseasesinternational.org/event/who-icd11-rdi-webinar-2022-09-27/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-10.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T140000
DTEND;TZID=UTC:20220927T150000
DTSTAMP:20261023T153217
CREATED:20220909T141529Z
LAST-MODIFIED:20220909T141540Z
UID:10000285-1664287200-1664290800@www.rarediseasesinternational.org
SUMMARY:Webinaire sur l'utilisation de la CIM-11 pour les maladies rares
DESCRIPTION:Dans le cadre de la série de webinaires CIM-11 de l’OMS\, l’unité Classifications et terminologies\, en collaboration avec la division Healthier Populations de l’OMS et Rare Diseases International\, organise un webinaire CIM-11 qui se tiendra le 27 septembre 2022. ONLINE. \nUn événement co-organisé par l’OMS et Rare Diseases International.
URL:https://www.rarediseasesinternational.org/event/webinaire-sur-lutilisation-de-la-cim-11-pour-les-maladies-rares/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-10.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T000000
DTEND;TZID=UTC:20220930T000000
DTSTAMP:20261023T153217
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:20220926T103000
DTEND;TZID=UTC:20220926T130000
DTSTAMP:20261023T153217
CREATED:20220919T140945Z
LAST-MODIFIED:20220919T140955Z
UID:10000288-1664188200-1664197200@www.rarediseasesinternational.org
SUMMARY:Enfermedades Raras : Presente y Futuro
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/enfermedades-raras-presente-y-futuro/
CATEGORIES:Événement mondial
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-11.png
END:VEVENT
END:VCALENDAR