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X-WR-CALDESC:Events for Rare Diseases International
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DTSTART:20220101T000000
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DTSTART:20220327T010000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240612T080000
DTEND;TZID=UTC:20240614T170000
DTSTAMP:20260501T230603
CREATED:20240408T072338Z
LAST-MODIFIED:20240429T143348Z
UID:10000356-1718179200-1718384400@www.rarediseasesinternational.org
SUMMARY:World Congress for Rare Skin Disorders
DESCRIPTION:The objectives of the congress are: \nTo share knowledge on diagnosis (including pathophysiology and disease classification) and management of rare and complex skin disorders (skin cancers and aggressive tumors\, autoimmune bullous diseases\, complex vascular malformations and tumors\, auto-inflammatory and autoimmune cutaneous disorders\, toxiderma\, ectodermal dysplasia and incontinentia pigmenti\, DNA Repair Disorders & photosensitivity\, monogenic fibrosing diseases\, epidermolysis bullosa and skin fragility\, cornification disorders)\nTo develop a multidisciplinary approach and improve skills to manage common problems in rare and complex skin disorders\nTo know more about the latest research findings and tools in the field of skin biology\, genetics\, therapeutics\nTo learn more about patient engagement and empowerment as well as patient education programmes
URL:https://www.rarediseasesinternational.org/event/world-congress-for-rare-skin-disorders/
LOCATION:Maison Internationale\, Cité Internationale de l’Université de Paris\, 17 Boulevard Jourdan\, Paris\, 75104\, France
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2024/04/WCRSD_2024-poster_web.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240516
DTEND;VALUE=DATE:20240520
DTSTAMP:20260501T230603
CREATED:20231016T104632Z
LAST-MODIFIED:20231016T140808Z
UID:10000326-1715817600-1716163199@www.rarediseasesinternational.org
SUMMARY:MENA Congress for Rare Diseases
DESCRIPTION:MENA Congress for Rare Diseases will be held in Beach Rotana\, Abu Dhabi\,\nUnited Arab Emirates from 16 to 19 May 2024. This conference will be the largest\nevent for rare diseases in the region and will last for 4 days during which more than\n100 speakers\, including more than 30 international experts\, will give the most\nupdated knowledge in more than 100 presentations\, workshops\, and group meetings\nin various fields related to rare diseases. The meeting will also accept abstracts\nrelated to rare diseases\, and the best submitted abstracts will be presented orally\nand receive awards. Other abstracts will be presented as posters. This conference is\na unique platform that brings all parties involved in rare diseases to one place to\nobtain the most updated knowledge\, increase awareness\, exchange experience\,\nadvance research\, establish networks\, explore collaborative opportunities\, and\nprovide better care for individuals with rare diseases. We look forward to seeing you\namong us at the MENA Congress for Rare Diseases. For more information and\nregistration please visit the website: https://menararediseases.com/
URL:https://www.rarediseasesinternational.org/event/mena-organization-for-rare-diseases-annual-meeting-exhibition/
LOCATION:Beach Rotana\, Abu Dhabi\, United Arab Emirates
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/07/NEW-LOGO-2-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240423T080000
DTEND;TZID=UTC:20240425T170000
DTSTAMP:20260501T230603
CREATED:20240325T140941Z
LAST-MODIFIED:20240325T141733Z
UID:10000354-1713859200-1714064400@www.rarediseasesinternational.org
SUMMARY:World Orphan Drug Congress USA
DESCRIPTION:The World Orphan Drug Congress USA is the defining event for the rare disease and orphan drug space globally. Widely regarded as the most important event for all rare disease stakeholders to attend\, we are yet again bringing together top thought leaders from around the globe for our 2024 edition with even bigger ambitions to pave the future for rare diseases. \nReturning to the Boston Convention & Exhibition Center April 23-25\, this upcoming event will cover conversations on next generation therapies\, clinical development and regulatory\, global market & patient access\, advanced therapies\, rare disease advocacy\, and more! Hear from industry leaders as they share cutting-edge insights\, like visionaries Peter Marks (FDA) and Peter Saltonstall (NORD). \nMark your calendar and join the event making a difference in the lives of individuals and families living with a rare disease. Get your ticket here to get in on the best networking experience the orphan drug and rare disease space has to offer. \nYou can view the agenda here.
URL:https://www.rarediseasesinternational.org/event/world-orphan-drug-congress-usa/
LOCATION:Boston Convention and Exhibition Center\, Boston\, Mass\, USA\, 415 Summer St\, Boston\, MA\, United States
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/03/Screenshot-2024-03-25-at-15.16.53.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230717
DTEND;VALUE=DATE:20230721
DTSTAMP:20260501T230603
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:20260501T230603
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;VALUE=DATE:20230315
DTEND;VALUE=DATE:20230319
DTSTAMP:20260501T230603
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:20230306
DTEND;VALUE=DATE:20230309
DTSTAMP:20260501T230603
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:20260501T230603
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;TZID=Europe/Paris:20230202T140000
DTEND;TZID=Europe/Paris:20230202T144500
DTSTAMP:20260501T230603
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:20260501T230603
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:20260501T230603
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;VALUE=DATE:20221129
DTEND;VALUE=DATE:20221201
DTSTAMP:20260501T230603
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;VALUE=DATE:20221125
DTEND;VALUE=DATE:20221127
DTSTAMP:20260501T230603
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:20221116T000000
DTEND;TZID=UTC:20221119T000000
DTSTAMP:20260501T230603
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:20260501T230603
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;TZID=UTC:20220929T180000
DTEND;TZID=UTC:20220929T180000
DTSTAMP:20260501T230603
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:20260501T230603
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:20260501T230603
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:20220927T000000
DTEND;TZID=UTC:20220930T000000
DTSTAMP:20260501T230603
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:20260501T230603
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:20260501T230603
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
BEGIN:VEVENT
DTSTART;TZID=UTC:20220921T170000
DTEND;TZID=UTC:20220921T190000
DTSTAMP:20260501T230603
CREATED:20220919T145205Z
LAST-MODIFIED:20220919T145205Z
UID:10000289-1663779600-1663786800@www.rarediseasesinternational.org
SUMMARY:Investing in Health Systems strengthening for Universal Health Coverage through a primary health care oriented approach
DESCRIPTION:The 3rd annual ministerial meeting on Universal Health Coverage: Investing in #health systems strengthening for UHC through a primary healthcare oriented approach.  \nONLINE
URL:https://www.rarediseasesinternational.org/event/uhc2030-who-event-2022-09-21/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/09/Website-Event-Image-12.png
ORGANIZER;CN="The World Health Organization":MAILTO:https://www.who.int/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220807
DTEND;VALUE=DATE:20220810
DTSTAMP:20260501T230603
CREATED:20220721T093100Z
LAST-MODIFIED:20220721T093725Z
UID:10000260-1659830400-1660089599@www.rarediseasesinternational.org
SUMMARY: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. This event focuses on those with acute disseminated encephalomyelitis (ADEM)\, acute flaccid myelitis (AFM)\, MOG antibody disease (MOGAD)\, neuromyelitis optica spectrum disorder (NMOSD)\, optic neuritis (ON)\, and transverse myelitis (TM)\, as well as their families\, care partners\, and medical professionals. \nHybrid – Online and Los Angeles\, CA\, USA
URL:https://www.rarediseasesinternational.org/event/rare-neuroimmune-disorders-symposium-2022-10-7/
LOCATION:Hilton Los Angeles Airport\, 5711 West Century Boulevard Los Angeles\, Los Angeles\, CA 90045\, United States
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/07/Website-Event-Image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220625
DTEND;VALUE=DATE:20220630
DTSTAMP:20260501T230603
CREATED:20220516T145902Z
LAST-MODIFIED:20220516T150335Z
UID:10000252-1656115200-1656547199@www.rarediseasesinternational.org
SUMMARY:HTAi Annual Meeting 2022 (Hybrid Event)
DESCRIPTION:The 2022 Annual Meeting will offer a hybrid event with on-site and virtual access! Discussions will focus on Lifecycle Approach: Coming Together to Make it Happen.
URL:https://www.rarediseasesinternational.org/event/htai-annual-meeting-2022-6/
CATEGORIES:Global Event
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20220519T190000
DTEND;TZID=Europe/Paris:20220519T203000
DTSTAMP:20260501T230603
CREATED:20220516T144718Z
LAST-MODIFIED:20220517T075402Z
UID:10000248-1652986800-1652992200@www.rarediseasesinternational.org
SUMMARY:How Patient Involvement is Making a Difference in HTA: PCIG Webinar
DESCRIPTION:HTAi’s Patient and Citizen Involvement in HTA Interest Group (PCIG) will be looking at “Stakeholders’ perspectives of impact in patient involvement in HTA.” The project team collects and evaluates multi-stakeholder perspectives about the perceived difference patient involvement has made in specific HTAs or HTA processes. \nThe team and invited speakers will share case examples of impact from different stakeholders’ perspectives and review the preliminary findings from this research\, highlighting the various domains and types of impact identified. The webinar will also provide an opportunity to discuss good practice and encourage reflection on patient involvement processes.
URL:https://www.rarediseasesinternational.org/event/patient-involvement-rare-deases-webinar-2022-5/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-15.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220513
DTEND;VALUE=DATE:20220514
DTSTAMP:20260501T230603
CREATED:20220506T092645Z
LAST-MODIFIED:20220506T092645Z
UID:10000209-1652400000-1652486399@www.rarediseasesinternational.org
SUMMARY:Improving Rare Disease Diagnostics & Care (Online)
DESCRIPTION:Join The Hill for a discussion on improving the diagnostic journey for the 30 million Americans living with rare disease.
URL:https://www.rarediseasesinternational.org/event/diagnostic-care-rd-2022-5/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220509T000000
DTEND;TZID=UTC:20220509T000000
DTSTAMP:20260501T230603
CREATED:20220509T112421Z
LAST-MODIFIED:20220509T112421Z
UID:10000229-1652054400-1652054400@www.rarediseasesinternational.org
SUMMARY:UIA Associations Round Table Brussels 2022
DESCRIPTION:The UIA Round Tables provide an opportunity to learn through networking and through practice\, to meet other international associations and share experience and knowledge to help you run your organization better.
URL:https://www.rarediseasesinternational.org/event/uia-round-table-brussels-2022-5/
LOCATION:Marriott Grand Place\, Brussels\, Belgium
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/05/Website-Event-Image-8.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220427
DTEND;VALUE=DATE:20220430
DTSTAMP:20260501T230603
CREATED:20220426T095431Z
LAST-MODIFIED:20220426T101347Z
UID:10000185-1651017600-1651276799@www.rarediseasesinternational.org
SUMMARY:IPIC 5th Edition
DESCRIPTION:Meet up with world-renowned experts\, and many other colleagues and stakeholders\, with an interest in primary immunodeficiencies/Inborn Errors of Immunity.
URL:https://www.rarediseasesinternational.org/event/ipic-2022-4/
LOCATION:Algarve Congress Center\, Vilamoura\, Portugal
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220423T000000
DTEND;TZID=America/New_York:20220423T000000
DTSTAMP:20260501T230603
CREATED:20220419T063512Z
LAST-MODIFIED:20220419T063616Z
UID:10000106-1650672000-1650672000@www.rarediseasesinternational.org
SUMMARY:Cure CMD Young Adult Educational Transitions Webinar
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/cure-cmd-webinar/
CATEGORIES:Global Event
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2022/04/Website-Event-Image-10.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260501T230603
CREATED:20220121T125602Z
LAST-MODIFIED:20220211T110402Z
UID:10000162-1646006400-1646092799@www.rarediseasesinternational.org
SUMMARY:Global Rare Disease Day Event - World Expo Dubai/ONLINE
DESCRIPTION:Register
URL:https://www.rarediseasesinternational.org/event/global-rare-disease-day/
CATEGORIES:Global Event,Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2022/01/Website-Event-Image-3.png
END:VEVENT
END:VCALENDAR