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X-WR-CALNAME:Rare Diseases International
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X-WR-CALDESC:Events for Rare Diseases International
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TZID:Europe/Paris
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20220327T010000
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TZOFFSETTO:+0100
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DTSTART:20221030T010000
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DTSTART:20230326T010000
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DTSTART:20231029T010000
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TZNAME:UTC
DTSTART:20220101T000000
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DTSTART:20220327T010000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230302
DTSTAMP:20260507T070702
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/
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20221212T140000
DTEND;TZID=Europe/Paris:20221212T153000
DTSTAMP:20260507T070702
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:20260507T070702
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;VALUE=DATE:20221201
DTEND;VALUE=DATE:20221203
DTSTAMP:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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;TZID=UTC:20221122T140000
DTEND;TZID=UTC:20221122T220000
DTSTAMP:20260507T070702
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=Europe/Paris:20221117T000000
DTEND;TZID=Europe/Paris:20221117T000000
DTSTAMP:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20260507T070702
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:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20260507T070702
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:20221007
DTEND;VALUE=DATE:20221010
DTSTAMP:20260507T070702
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:20260507T070702
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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220929T090000
DTEND;TZID=UTC:20220929T100000
DTSTAMP:20260507T070702
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:20260507T070702
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
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ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220927T140000
DTEND;TZID=UTC:20220927T150000
DTSTAMP:20260507T070702
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:20220927T000000
DTEND;TZID=UTC:20220930T000000
DTSTAMP:20260507T070702
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:20260507T070702
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-11.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220926
DTEND;VALUE=DATE:20220927
DTSTAMP:20260507T070702
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
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-6.png
END:VEVENT
END:VCALENDAR