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X-WR-CALNAME:Rare Diseases International
X-ORIGINAL-URL:https://www.rarediseasesinternational.org
X-WR-CALDESC:Events for Rare Diseases International
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DTSTART:20240101T000000
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TZID:Europe/Paris
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DTSTART:20240331T010000
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DTSTART:20241027T010000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260423T140000
DTEND;TZID=UTC:20260423T150000
DTSTAMP:20260429T013912
CREATED:20260413T111220Z
LAST-MODIFIED:20260413T111220Z
UID:10000375-1776952800-1776956400@www.rarediseasesinternational.org
SUMMARY:Public Webinar: Is Traditional Health Financing Leaving Rare Diseases Behind
DESCRIPTION:How can innovative financing approaches improve equitable access to diagnosis\, treatment\, and care for people living with rare diseases? \nJoin us for a new webinar series bringing together health economists\, policymakers\, patient advocates\, and payers. Through a multistakeholder dialogue\, this series will examine key financing gaps and barriers to access\, map these challenges to relevant innovative financing mechanisms\, discuss enabling conditions for implementation\, and inform policy and advocacy actions. \nIn this first session\, we will focus on the structural challenges in current health financing systems — including small patient populations\, high treatment costs\, HTA limitations\, fragmented risk pools\, and budget impact concerns — that leave 95% of rare diseases without treatment and millions without access to care. The discussion will explore how these systemic weaknesses contribute to inequities in access to diagnosis\, treatment\, and care. This session will ground the series in global evidence and set the stage for exploring innovative solutions in the following webinars. \n🗓️ Thursday 23rd April\, 2pm – 3pm CEST \n📲 Registration link \nStay tuned for more details on speakers soon! \nThis project is being carried out with the support of Fondation Ipsen\, under the aegis of Fondation de France.
URL:https://www.rarediseasesinternational.org/event/public-webinar-is-traditional-health-financing-leaving-rare-diseases-behind/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/04/innovative-financing.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260217T150000
DTEND;TZID=UTC:20260217T160000
DTSTAMP:20260429T013912
CREATED:20260210T201029Z
LAST-MODIFIED:20260210T201055Z
UID:10000374-1771340400-1771344000@www.rarediseasesinternational.org
SUMMARY:Mapping Rare Webinar
DESCRIPTION:In celebration of Rare Disease Day 2026\, join us for a global event highlighting achievements from our global community! \nIn this special webinar\, RDI will spotlight inspiring Mapping Rare projects from around the world\, showcasing creativity\, the power of community\, and the voices making rare diseases visible. \n🗓️ 17 February 2026\n🕒 3–4pm CET\n📲 Register here: https://lnkd.in/db8HRPtj \nin English with live Spanish interpreting and multilingual captions \nLet’s connect\, celebrate achievements\, and keep mapping the impact of our global rare disease community
URL:https://www.rarediseasesinternational.org/event/mapping-rare-webinar/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2026/02/Mapping-Rare-RDD.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250925T170000
DTEND;TZID=UTC:20250925T180000
DTSTAMP:20260429T013912
CREATED:20250911T150503Z
LAST-MODIFIED:20250911T150707Z
UID:10000373-1758819600-1758823200@www.rarediseasesinternational.org
SUMMARY:RDI Regional Webinar: From WHA Resolution to Action: Next Steps for Latin America and the Caribbean
DESCRIPTION:Join us for a webinar co-hosted by ALIBER\, Casa Hunter and ERCAL to learn how we can work together to ensure that the WHA Resolution has real impact for Persons Living with a Rare Disease in Latin America and the Caribbean.
URL:https://www.rarediseasesinternational.org/event/rdi-regional-webinar-from-wha-resolution-to-action-next-steps-for-latin-america-and-the-caribbean/
CATEGORIES:Hosted by RDI,Regional Meeting
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/09/multilingual2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250521T180000
DTEND;TZID=UTC:20250521T210000
DTSTAMP:20260429T013912
CREATED:20250306T090455Z
LAST-MODIFIED:20250512T100530Z
UID:10000371-1747850400-1747861200@www.rarediseasesinternational.org
SUMMARY:RDI World Health Assembly Side Event
DESCRIPTION:Rare Diseases International and partners will hold a side event alongside the World Health Assembly in Geneva\, Switzerland on Wednesday\, 21 May 2025 at La Pastorale from 6-8:30 PM. \nThis event will celebrate the significant achievements of our members\, community\, and partners over the last 10 years and chart the next era of advocacy\, policy\, research\, and care. \nWith the potential adoption of the WHA Resolution on Rare Diseases\, this event presents a unique opportunity to build on the progress our community has achieved and continue towards our goal: Universal Health Coverage for Persons Living with a Rare Disease or condition\, no matter where they live. \nMore information is available here.
URL:https://www.rarediseasesinternational.org/event/rdi-world-health-assembly-side-event/
LOCATION:La Pastorale\, Geneva\, 106 Route de Ferney\, Geneva\, Switzerland
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/05/Save-the-Date-WHA-78-Side-Event12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250417
DTEND;VALUE=DATE:20250421
DTSTAMP:20260429T013912
CREATED:20240911T100224Z
LAST-MODIFIED:20250207T110620Z
UID:10000361-1744848000-1745193599@www.rarediseasesinternational.org
SUMMARY:MENA Congress for Rare Diseases 2025
DESCRIPTION:MENA Congress for Rare Diseases 2025 will take place in Abu Dhabi from 17 to 20 April 2025. It will be the largest event for rare diseases with more than 160 speakers covering variable fields of rare diseases. \nYou can use the “SPK120” for registration at nominal fee (only 120 AED instead of the regular registration fee of 2400 AED). \nFor more information and registration please visit the website: https://menararediseases.com/
URL:https://www.rarediseasesinternational.org/event/mena-congress-for-rare-diseases-2025/
LOCATION:Beach Rotana\, Abu Dhabi\, United Arab Emirates
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2024/09/Opening-Session-MENA-Congress-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250327
DTEND;VALUE=DATE:20250329
DTSTAMP:20260429T013912
CREATED:20250306T090837Z
LAST-MODIFIED:20250306T090837Z
UID:10000372-1743033600-1743206399@www.rarediseasesinternational.org
SUMMARY:5th International Conference on Rare Diseases\, Greece
DESCRIPTION:The 5th International Conference on Rare Diseases\, organized by RDI Member Rare Diseases Greece\,  brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to set a course for the future of rare diseases.
URL:https://www.rarediseasesinternational.org/event/5th-international-conference-on-rare-diseases-greece/
LOCATION:Technopolis City of Athens\, Athens\, Greece
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2025/03/Greece.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250305
DTEND;VALUE=DATE:20250308
DTSTAMP:20260429T013912
CREATED:20250128T104346Z
LAST-MODIFIED:20250128T104728Z
UID:10000369-1741132800-1741391999@www.rarediseasesinternational.org
SUMMARY:RE(ACT) Congress and IRDiRC Conference
DESCRIPTION:Continuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition)\, this conference brings together visionary leaders\, distinguished experts\, and emerging talents from diverse scientific domains\, converging to unveil groundbreaking research\, foster dialogue\, and shape policies crucial to rare disease research. \nSince its inception in 2012\, the RE(ACT) Congress\, pioneered by the BLACKSWAN Foundation\, has catalyzed scientific collaboration and advancement in rare and orphan diseases. Meanwhile\, IRDiRC\, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health\, has been pivotal in galvanizing global cooperation among researchers\, funders\, and patient advocacy groups within a multinational framework. \nThis joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference\, in partnership with the European Rare Diseases Research Alliance (ERDERA)\, Eurordis (the European Alliance of Patient Organizations)\, symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.
URL:https://www.rarediseasesinternational.org/event/react-congress-and-irdirc-conference/
LOCATION:Brussels Pullman Centre Midi
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/REACT-Conf-2025.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250227T143000
DTEND;TZID=UTC:20250227T160000
DTSTAMP:20260429T013912
CREATED:20250122T115845Z
LAST-MODIFIED:20250213T085252Z
UID:10000368-1740666600-1740672000@www.rarediseasesinternational.org
SUMMARY:Rare Disease Day Webinar-From Grassroots to Global: Growing Momentum towards the WHA Resolution on Rare Diseases
DESCRIPTION:This year’s Rare Disease Day theme “More than You Can Imagine” reminds us of the milestones we have achieved by working together as a global community — most recently\, in our collective efforts to advocate for a World Health Assembly Resolution on Rare Diseases. \nThere is more power\, dedication and commitment in our community than we ever imagined\, and we are proud to bring our members\, partners and friends together to reflect on our progress — how far we have come\, and how far we can go. \nJoin us for a public webinar on Thursday\, 27 February 2025 at 14:30 CET and find out how we can imagine a better future for Persons Living with a Rare Disease — together! \nRegister now.
URL:https://www.rarediseasesinternational.org/event/rare-disease-day-webinar-from-grassroots-to-global-growing-momentum-towards-the-wha-resolution-on-rare-diseases/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/RDD-2025-Webinar-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250212T140000
DTEND;TZID=UTC:20250212T150000
DTSTAMP:20260429T013912
CREATED:20250109T104206Z
LAST-MODIFIED:20250109T104250Z
UID:10000366-1739368800-1739372400@www.rarediseasesinternational.org
SUMMARY:RDI PUBLIC WEBINAR: Rare Disease Expertise \, Centers and Networks: Results of the Survey
DESCRIPTION:Join us to for a public webinar presenting the results of the RDI’s recent survey on rare diseases expertise. \nWe will share key findings from the survey on rare disease expertise around the globe\, including insights into care-providing centers\, networks\, and collaborations. \nIf you would like to attend and haven’t register yet\, register here.
URL:https://www.rarediseasesinternational.org/event/rdi-public-webinar-rare-disease-expertise-center-and-networks-results-of-the-survey/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/Updated-WHA-Public-Webinar-graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250212T090000
DTEND;TZID=UTC:20250212T170000
DTSTAMP:20260429T013912
CREATED:20250131T061408Z
LAST-MODIFIED:20250131T061408Z
UID:10000370-1739350800-1739379600@www.rarediseasesinternational.org
SUMMARY:3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases
DESCRIPTION:Instituto Unidos Pela Vida will host the 3rd Brazilian Health Technology Assessment (HTA) Forum for Rare Diseases on February 12\, from 9:00 AM to 5:00 PM\, BRT. The event will take place at Blue Tree Premium Morumbi in São Paulo\, Brazil\, and will also be available online via the Congresse.me platform. \nThe forum aims to provide a platform for discussing Health Technology Assessment (HTA) processes\, with a special focus on rare diseases. It will explore the importance of monitoring\, the challenges involved\, and ways to empower the rare disease community to actively participate in social engagement opportunities.The event will be hosted and moderated by Verônica Stasiak Bednarczuk\, founder and executive director of Unidos pela Vida\, alongside organization directors Marise Basso Amaral and Cristiano Silveira. The Forum will feature simultenous translation into Brazilian sign language\, English\, and Spanish. Register here.
URL:https://www.rarediseasesinternational.org/event/3rd-brazilian-health-technology-assessment-hta-forum-for-rare-diseases/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/English-Feed.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250121T080000
DTEND;TZID=UTC:20250124T170000
DTSTAMP:20260429T013912
CREATED:20250109T105532Z
LAST-MODIFIED:20250109T105532Z
UID:10000367-1737446400-1737738000@www.rarediseasesinternational.org
SUMMARY:Global Albinism Alliance : ISCA 2025
DESCRIPTION:Join the Global Albinism Alliance at the 2025 International Scientific Conference on Albinism. \nThe event  will be held virtually from January 21-25. \nIf you would like to attend and haven’t registered yet\, you can register here. The deadline for registration is on 15 January. \nLearn more about the programme here.
URL:https://www.rarediseasesinternational.org/event/global-albinism-alliance-isca-2025/
CATEGORIES:Hosted by RDI Member
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/1734599390733.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250116T140000
DTEND;TZID=UTC:20250116T150000
DTSTAMP:20260429T013912
CREATED:20250109T103135Z
LAST-MODIFIED:20250116T132110Z
UID:10000365-1737036000-1737039600@www.rarediseasesinternational.org
SUMMARY:RDI Members Information Session on the WHA Resolution
DESCRIPTION:This webinar will be an opportunity to explain in more detail the background for the WHA Resolution on Rare Diseases\, as well as the progress that has been made so far\, the current status of the initiative\, and next steps. \nIt will also be an opportunity for members to ask questions and clarify anything about the initiative.  to update on the resolution activities\, launch the coalition\, and discuss next steps in the resolution process. \n 
URL:https://www.rarediseasesinternational.org/event/rdi-members-information-session-on-the-wha-resolution/
CATEGORIES:Hosted by RDI
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2025/01/Updated-WHA-Public-Webinar-graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241107
DTEND;VALUE=DATE:20241109
DTSTAMP:20260429T013912
CREATED:20240911T101358Z
LAST-MODIFIED:20240911T101358Z
UID:10000362-1730937600-1731110399@www.rarediseasesinternational.org
SUMMARY:XI Congreso/Encuentro Iberoamericano
DESCRIPTION:II0 Foro de Alto Nivel \nEl objetivo que la Alianza Iberoamericana de Enfermedades Raras pretende conseguir con este Foro de Alto nivel es generar un espacio a los diferentes Ministerios de Salud de intercambio de buenas prácticas que incidan en la necesidad de implementar la Resolución de las Naciones Unidad en todos los países de Latinoamérica\, así como impulsar dicha Resolución en la Organización Mundial de la Salud – OMS y lograr que se incorpore en la agenda de la Cumbre de Jefes de Estado la necesidad de abordar el tema de las Enfermedades Raras.
URL:https://www.rarediseasesinternational.org/event/xi-congreso-encuentro-iberoamericano/
LOCATION:Lima\, Peru
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2024/09/ALIBER2024.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241021T130000
DTEND;TZID=UTC:20241022T170000
DTSTAMP:20260429T013912
CREATED:20240701T152253Z
LAST-MODIFIED:20240701T152404Z
UID:10000358-1729515600-1729616400@www.rarediseasesinternational.org
SUMMARY:RDI Membership Meeting
DESCRIPTION:RDI will hold a Membership Meeting over 1.5 days from 21-22 October in Barcelona\, Spain\, followed by our participation in the World Orphan Drug Congress – Europe from 23-25 October. \nDetails to follow.
URL:https://www.rarediseasesinternational.org/event/rdi-membership-meeting/
LOCATION:Hotel SB Plaza\, Carrer de les Ciències\, 11\, 13\, 08908 L'Hospitalet de Llobregat\, Barcelona\, Spain
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/07/RDI-Membership-Meeting-WODC-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241016T080000
DTEND;TZID=UTC:20241017T170000
DTSTAMP:20260429T013912
CREATED:20240731T132627Z
LAST-MODIFIED:20240731T132627Z
UID:10000360-1729065600-1729184400@www.rarediseasesinternational.org
SUMMARY:Congress on Rare Diseases for Latin America and the Caribbean
DESCRIPTION:Americas Health Foundation (AHF) presents the second edition of the Congress on Rare Diseases for Latin America and the Caribbean\, a hybrid event designed to delve into the challenges and opportunities related to rare diseases in the region. This congress will address critical issues such as access to treatment\, regulation\, infrastructure\, registration and public policy. The congress will have a solutions-based approach to propose viable and actionable recommedations that benefit patients\, their families\, healthcare systems and society at large. \nThis event will bring together a wide range of key stakeholders\, including patient organizations\, medical and academic associations\, public sector representatives and the pharmaceutical industry. Together\, these participants will work to generate synergies and formulate recommendations to help overcome the challenges faced by the rare disease community in Latin America and the Caribbean. \nThe second edition of the Rare Disease Congress for Latin America and the Caribbean promises to be a dynamic and enriching space\, where collaboration and commitment will be key to advancing the improvement of care and treatment of rare diseases in the region.
URL:https://www.rarediseasesinternational.org/event/congress-on-rare-diseases-for-latin-america-and-the-caribbean/
ATTACH;FMTTYPE=image/jpeg:https://www.rarediseasesinternational.org/wp-content/uploads/2024/07/ercal.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241013T090000
DTEND;TZID=UTC:20241013T103000
DTSTAMP:20260429T013912
CREATED:20241001T162749Z
LAST-MODIFIED:20241003T073659Z
UID:10000363-1728810000-1728815400@www.rarediseasesinternational.org
SUMMARY:RDI Side Event @ WHS2024: Why Prioritize Rare Diseases in Global Health Policy?
DESCRIPTION:RDI will be hosting a side event “ Why Prioritize Rare Diseases in Global Health Policy” at the World Health Summit in Berlin from 13-15 October. \nThe overall objective of the event is to engage Ministries of Health\, the WHO\, World Bank\, IFPMA representatives and rare disease organizations in a discussion on why it is critical to prioritize rare diseases on the global health agenda\, notably through a WHA Resolution on Rare Diseases. The event aims to explore how to address an existing unmet need in healthcare by calling attention to the challenges faced by PLWRD and their families and showcasing successful initiatives developed worldwide\, and to emphasize the importance of a WHA Resolution on Rare Diseases. \nIn particular\, the event will: \n\nHighlight the significance of investing in rare diseases within the context of UHC.\nDiscuss the significance of the WHA Resolution on Rare Diseases and what it will bring to the rare disease community worldwide.\nExplore the challenges faced by research and development and innovation in rare diseases.\nShowcase innovative solutions and financing mechanisms that can improve access to care for individuals with rare diseases and explore the link with the WHA Resolution on Rare Diseases and corresponding Global Action Plan.\nFacilitate discussion and knowledge-sharing among stakeholders on best practices and future directions in health systems financing for rare diseases.\n\nLimited free passes to the event and the World Health Summit are available to RDI Members on a first-come\, first-serve basis. We invite you to attend our event in-person by contacting comms@rarediseasesint.org  to secure your place here: \nRegister here for the in-person event in Berlin. \nIf you will not be at the World Health Summit\, you can also follow the livestream of the session on RDI’s social media channels – Register here for the online event.
URL:https://www.rarediseasesinternational.org/event/rare-diseases-side-event-why-prioritize-rare-diseases-in-global-health-policy/
LOCATION:Brazzaville Lounge\, JW Marriot Hotel\, Berlin Germany\, Brazzaville Lounge\, JW Marriott Hotel\, Berlin\, Germany
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/10/WHA-Webinar-Save-the-Date-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240830T140000
DTEND;TZID=Europe/Paris:20240830T153000
DTSTAMP:20260429T013912
CREATED:20240704T152502Z
LAST-MODIFIED:20240820T213347Z
UID:10000359-1725026400-1725031800@www.rarediseasesinternational.org
SUMMARY:WHA Resolution on Rare Diseases Webinar
DESCRIPTION:This year\, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025\, and we need your help to make it a success. This webinar\, co-hosted by RDI the Arab Republic of Egypt\, the State of Qatar\, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality. \nJoin us to learn more about: \n\nThe challenges of PLWRD and opportunities to improve equity for PLWRD\nWhy a Resolution is critical and what it will bring at regional and national levels\nHow you can support this initiative\n\nDownload ” Towards a WHA Resolution on Rare Diseases” Webinar Concept Note.
URL:https://www.rarediseasesinternational.org/event/wha-public-webinar/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/07/Updated-WHA-Public-Webinar-graphic-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240627T080000
DTEND;TZID=UTC:20240629T170000
DTSTAMP:20260429T013912
CREATED:20240429T143154Z
LAST-MODIFIED:20240429T143154Z
UID:10000357-1719475200-1719680400@www.rarediseasesinternational.org
SUMMARY:IFPA conference (World Psoriasis and Psoriatic Arthritis Conference)
DESCRIPTION:Established in 2006\, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique\, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology\, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease. \nThe next conference will be held 27-29 June\, 2024 in Stockholm\, Sweden. \nThe theme of this Conference is: Uncovering the broad spectrum of psoriatic disease \nPrinciples of the IFPA Conference: \n    Increase global recognition of the seriousness of the diseases and to develop a broader international perspective of psoriatic disease\n    Encourage collaboration on developing future research and advocacy initiatives.\n    Increase awareness by medical professionals and industry of the role of IFPA and its members in assisting the medical advancement in psoriatic disease. \nDeveloping a scientific program for all: \n    Patients in IFPA’s network propose themes in a global survey\n    The Scientific Executive Committee develops the Conference program with patient priorities in focus\n    The Scientific Advisory Board reviews the program for quality assurance\n    The IFPA Conference aligns scientific progress with patient priorities\, unleashing breakthroughs for experts of all backgrounds
URL:https://www.rarediseasesinternational.org/event/ifpa-conference-world-psoriasis-and-psoriatic-arthritis-conference/
ATTACH;FMTTYPE=image/png:https://www.rarediseasesinternational.org/wp-content/uploads/2024/04/IFPA-CONFERENCE-2024_Social_05.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240612T080000
DTEND;TZID=UTC:20240614T170000
DTSTAMP:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20240515
DTEND;VALUE=DATE:20240517
DTSTAMP:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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:20260429T013912
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
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END:VCALENDAR