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X-WR-CALDESC:Events for Rare Diseases International
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DTSTART;TZID=UTC:20240612T080000
DTEND;TZID=UTC:20240614T170000
DTSTAMP:20260508T224252
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:20240607
DTEND;VALUE=DATE:20240609
DTSTAMP:20260508T224252
CREATED:20231122T095729Z
LAST-MODIFIED:20240429T142527Z
UID:10000345-1717718400-1717891199@www.rarediseasesinternational.org
SUMMARY:NORD Living Rare\, Living Stronger Patient and Family Forum
DESCRIPTION:The 2024 NORD® Living Rare\, Living Stronger® Patient and Family Forum will be held in Los Angeles\, CA at the Hilton Universal City on June 8. After six years\, we are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning\, networking\, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together\, often for the first time\, to gain practical knowledge on how to manage their health and live their best rare lives. \nProgram topics often include sessions about how to advocate for yourself in the healthcare system\, how to coordinate your medical care team\, and how get involved in rare disease research and advocacy. This is a program you don’t want to miss!
URL:https://www.rarediseasesinternational.org/event/nord-living-rare-living-stronger-patient-and-family-forum/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/webp:https://www.rarediseasesinternational.org/wp-content/uploads/2023/11/lrls-logo-2024.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240529T180000
DTEND;TZID=UTC:20240529T210000
DTSTAMP:20260508T224253
CREATED:20240311T124300Z
LAST-MODIFIED:20240528T092803Z
UID:10000353-1717005600-1717016400@www.rarediseasesinternational.org
SUMMARY:World Health Assembly Side Event\, Geneva
DESCRIPTION:A side event to be held alongside the World Health Assembly in Geneva. The event will be followed by a cocktail reception.
URL:https://www.rarediseasesinternational.org/event/world-health-assembly-side-event-geneva/
LOCATION:Restaurant Vieux Bois\, 12\, avenue de la Paix\, Geneva\, CH-1202\, Switzerland
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/05/WHA-Side-Event-LinkedIn.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240516
DTEND;VALUE=DATE:20240520
DTSTAMP:20260508T224253
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;VALUE=DATE:20240515
DTEND;VALUE=DATE:20240517
DTSTAMP:20260508T224253
CREATED:20231122T095100Z
LAST-MODIFIED:20240429T142115Z
UID:10000344-1715731200-1715903999@www.rarediseasesinternational.org
SUMMARY:European Conference on Rare Diseases and Orphan Products
DESCRIPTION:The ECRD is the largest\, patient-led\, rare disease policy-shaping event held in Europe. \nBy bringing together people with rare diseases and patient advocates\, policy makers\, healthcare industry representatives\, clinicians\, regulators and Member State representatives\, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. \nWith over 1000 participants\, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts\, these discussions culminate in clear policy recommendations that can influence both EU and national policies. \nMark your calendars for the next ECRD\, a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels. 
URL:https://www.rarediseasesinternational.org/event/european-conference-on-rare-diseases-and-orphan-products/
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2023/11/ECRD.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240423T080000
DTEND;TZID=UTC:20240425T170000
DTSTAMP:20260508T224253
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;TZID=UTC:20240421T080000
DTEND;TZID=UTC:20240424T170000
DTSTAMP:20260508T224253
CREATED:20240402T161429Z
LAST-MODIFIED:20240402T161559Z
UID:10000355-1713686400-1713978000@www.rarediseasesinternational.org
SUMMARY:World Federation of Hemophilia Congress
DESCRIPTION:Get ready to embark on an unparalleled journey into the world of inherited bleeding disorders—which are rare diseases—at the WFH 2024 World Congress. Taking place in Madrid\, Spain from April 21 to 24\, the event is co-hosted by the World Federation of Hemophilia (WFH) and La Federación Española de Hemofilia (Fedhemo). With over 90 hours of educational content meticulously curated across eight tracks\, this event promises to be the most important meeting in the field this year. From engaging workshops and plenary sessions to informative poster presentations\, attendees will have the opportunity to immerse themselves in the latest advancements\, insights\, and discussions related to inherited bleeding disorders care. \nWith networking events\, language interpretation services\, and celebratory moments as part of the program\, the WFH 2024 World Congress promises an enriching and unforgettable experience for all attendees. Learn more and register here.
URL:https://www.rarediseasesinternational.org/event/world-federation-of-hemophilia-congress/
LOCATION:Madrid\, Spain
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/04/eBlast-Header-March-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240412T140000
DTEND;TZID=UTC:20240412T150000
DTSTAMP:20260508T224253
CREATED:20240223T092249Z
LAST-MODIFIED:20240223T092714Z
UID:10000352-1712930400-1712934000@www.rarediseasesinternational.org
SUMMARY:Members Webinar: Understanding the WHO Essential Medicines List: Implications for Rare Diseases
DESCRIPTION:
URL:https://www.rarediseasesinternational.org/event/webinar-for-members-understanding-the-who-essential-medicines-list-implications-for-rare-diseases/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/02/EML-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240328T140000
DTEND;TZID=UTC:20240328T144500
DTSTAMP:20260508T224253
CREATED:20240208T114702Z
LAST-MODIFIED:20240208T114702Z
UID:10000351-1711634400-1711637100@www.rarediseasesinternational.org
SUMMARY:Members Webinar: WHA Resolution 2025
DESCRIPTION:Join us for a webinar on the WHA Resolution 2025. Open to RDI Members.
URL:https://www.rarediseasesinternational.org/event/members-webinar-wha-resolution-2025/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/02/WHA-Webinar-Save-the-Date.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240301T140000
DTEND;TZID=UTC:20240301T153000
DTSTAMP:20260508T224253
CREATED:20240126T103053Z
LAST-MODIFIED:20240126T103053Z
UID:10000346-1709301600-1709307000@www.rarediseasesinternational.org
SUMMARY:Mapping Rare Launch Webinar
DESCRIPTION:This Rare Disease Day\, join us for the launch of Mapping Rare\, an interactive project to showcase the achievements of our global community.  The map will be launched here on our on 29 February\, followed by a webinar to introduce the project\, including a Q & A with the participants
URL:https://www.rarediseasesinternational.org/event/mapping-rare-launch-webinar/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/01/Interactive-Map-Project-simple.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240214
DTEND;VALUE=DATE:20240218
DTSTAMP:20260508T224253
CREATED:20231122T094213Z
LAST-MODIFIED:20231122T094213Z
UID:10000343-1707868800-1708214399@www.rarediseasesinternational.org
SUMMARY:RareX 2024
DESCRIPTION:The Third Biennial Rare Diseases Conference\, Rare 2024\, takes place in Johannesburg from February 14 to 17\, 2024. This conference serves a vital purpose — to unite rare disease patients\, dedicated healthcare professionals\, and invested stakeholders in a collaborative environment. It’s a place where dialogues about rare diseases and their treatments find expression. \nRare 2024 is more than a conference; it’s a convergence of South African\, African and International rare diseases communities. It’s a coming together of innovators\, policymakers\, and those entrusted with healthcare and reimbursement matters. It’s where the creators of life-changing drugs and health-related essentials gather to forge a way forward to ensure access and equity for those with rare diseases. Amongst the academic and scientific aspects of this conference\, patients\, caregivers and  support groups bring real inspiration\, learnings from one another\, educating on their missions\, and discovering new ways to serve their communities. \nThrough panel discussions\, presentations\, and networking\, Rare 2024 allows the meeting of minds in the rare diseases community. At the heart of Rare 2024\, you’ll find an environment that is not only professional and productive but also deeply caring and inclusive. It’s an opportunity for patients\, families\, healthcare workers\, and stakeholders to come together to learn\, grow\, and connect. \n 
URL:https://www.rarediseasesinternational.org/event/rarex-2024/
LOCATION:Indaba Hotel\, Johannesburg\, South Africa\, William Nicol Drive\, Pieter Wenning Road\, Johannesburg\, Fourways\, Sandton\, 2191\, South Africa
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2023/11/RareX2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240206T150000
DTEND;TZID=UTC:20240206T160000
DTSTAMP:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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:20260508T224253
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
END:VCALENDAR