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DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260611T121658
CREATED:20251125T113725Z
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SUMMARY:13th European Conference on Rare Disease and Orphan Drugs
DESCRIPTION:Rare disease research has long driven breakthroughs in more common conditions\, reinforcing Europe’s role as a global leader in biotechnology and precision medicine. Investing in this field is not only a moral imperative—it is a strategic move to boost Europe’s competitiveness in the life sciences. This is especially important in the context of the deployment of the Life Science Strategy and on the eve of the adoption of the Biotech Act. \nECRD 2026 will be a pivotal moment for rare disease policy in Europe\, taking place five years after Rare2030 and midway to the 2028 WHO Global Plan target. At a time when the European Commission has yet to commit to a formal EU Action Plan\, the conference will unite stakeholders to assess progress and reignite momentum. \nThe event will launch a community-led effort to co-develop an EU Action Plan—or Strategic Framework—for Rare Diseases. This process begins with a “planning for a plan” approach\, defining the scope\, objectives\, structure\, and governance model rooted in accountability and cross-sector co-ownership. \nECRD 2026 will gather input through thematic sessions aligned with Rare Disease International’s regional taskforces\, ensuring global coherence. The conference will also define concrete actions: the launch of a stakeholder-based Steering Group\, a drafting roadmap\, and a coordinated timeline leading to the plan’s advancement and formalisation\, anchoring European leadership in global rare disease policy development. \nPublic registration for ECRD 2026 will open in December 2025. \nMore information here.
URL:https://erdera.org/event/13th-european-conference-on-rare-disease-and-orphan-drugs/
CATEGORIES:Clinical Research,ERDERA,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE)
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20260611T121658
CREATED:20250225T083107Z
LAST-MODIFIED:20251009T121738Z
UID:10000004-1741046400-1741132799@erdera.org
SUMMARY:RE(ACT) Congress and IRDiRC Conference 2025
DESCRIPTION:Welcome to the pinnacle event in rare diseases research – the RE(ACT) Congress and IRDiRC Conference 2025\, held jointly by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). From March 5th to 7th\, we gathered in the vibrant city of Brussels for an unparalleled exchange of knowledge and ideas. \nContinuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition)\, this convergence served as a beacon for scientific innovation. Our assembly comprised 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. \nIn a testament to inclusivity and collaboration\, patients and advocacy organizations dedicated to research also graced our gathering\, enriching discussions with invaluable firsthand experiences and perspectives. \nhttps://erdera.org/wp-content/uploads/2025/08/REACT-short-promo-video.mp4\nSince its inception in 2012\, the RE(ACT) Congress\, pioneered by the BLACKSWAN Foundation\, has catalyzed scientific collaboration and advancement in the realm of 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)\, and RDI—Rare Diseases International (the global alliance of people living with rare diseases)\, symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge. \nTogether\, we embarked on a journey of discovery\, collaboration\, and hope\, setting new benchmarks in the relentless pursuit of solutions for people with rare diseases. Welcome to a convergence where every voice matters and every contribution propels us closer to a future where rare diseases are not barriers but conquerable frontiers.
URL:https://erdera.org/event/react-congress-and-irdirc-conference-2025-2/
CATEGORIES:Clinical Research,International Alignment,Patient Involvement (PPIE)
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240926T080000
DTEND;TZID=UTC:20240926T170000
DTSTAMP:20260611T121658
CREATED:20240625T051440Z
LAST-MODIFIED:20251009T121742Z
UID:10000002-1727337600-1727370000@erdera.org
SUMMARY:Training for Resources joining the Rare Diseases Virtual Platform
DESCRIPTION:This training is intended for resources that would like to connect to the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar2 activities. \nAt the end of this webinar\, you will be able to: \n\nDescribe how to interact with the Virtual Platform as part of a network of connected resources\nIdentify different means to onboard the Virtual Platform at Level 1 and Level 2 including the following\n\nMetadata model\n\nStructure of the metadata model and how to implement it\n\n\nFDP Index\n\nNetwork of connected resources\n\n\nBeacon-in-a-box\n\nPresent data to the VP via a Beacon endpoint\n\n\nFAIR-in-a-box\n\nPresent data to the VP using ontologies and semantic models\n\n\nMetadata validator\n\nTool to check the compliance of your metadata\n\n\n\n\n\nThis training is divided in three parts:\nThe first part of the webinar consists of a 30-minute description of the Virtual Platform and the advantages of connecting your resource to the Virtual Platform.\nIn the second part of the webinar (one hour) will showcase different ways to onboard the Virtual Platform.\nIn the third part of the webinar (30 minutes) will be dedicated to an interactive Q&A session with the technical experts.
URL:https://erdera.org/event/training-for-resources-joining-the-rare-diseases-virtual-platform/
CATEGORIES:Accelerator,Data Hub,Expertise Services,Funding
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20240828
DTEND;VALUE=DATE:20240829
DTSTAMP:20260611T121658
CREATED:20240625T051706Z
LAST-MODIFIED:20251009T121749Z
UID:10000003-1724803200-1724889599@erdera.org
SUMMARY:EJP RD Final Conference
DESCRIPTION:We are thrilled to invite you to the Final EJP RD Conference. Scheduled to take place from May 27th to May 28th\, 2024 at the Hotel Excelsior Bari\, Via G. Petroni\, 15\, Bari / Puglia\, Italy\, this conference is set to bring together leading experts\, professionals\, and enthusiasts from around the world. \nPlease note: the hybrid event is open in person only to invited people. The event is open for all online. \nEvent Highlights: \n\nDates: Monday\, May 27 – Tuesday\, May 28\, 2024\nVenue: Hotel Excelsior Bari\, Via G. Petroni\, 15\, Bari / Puglia\, Italy\nRegistration deadline: May 22nd\, 2024 – Registration is open here.\nAgenda available here.\n\nThis event is a partner event to the 12th European Conference on Rare Diseases and Orphan Products (ECRD). More information here.
URL:https://erdera.org/event/ejp-rd-final-conference/
CATEGORIES:Funding,International Alignment
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