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X-WR-CALDESC:Events for ERDERA
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DTSTART;TZID=UTC:20251112T080000
DTEND;TZID=UTC:20251112T080000
DTSTAMP:20260602T072658
CREATED:20251110T140039Z
LAST-MODIFIED:20251110T140236Z
UID:10000023-1762934400-1762934400@erdera.org
SUMMARY:Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach
DESCRIPTION:On November 12 at 11:00am (GMT+3) \, IBG RareBoost will host Dr. Başak Uysal from the ERDERA Coordination Team. She will deliver a presentation titled “Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach.” The seminar will be held in a hybrid format. Please scan the QR code on the flyer or click here to register. \nThe seminar will highlight ERDERA’s role in building a unified European rare diseases research ecosystem and making Europe a global leader in rare disease research and innovation by integrating funding\, data\, clinical research\, and policy. ERDERA accelerates diagnosis\, therapy development\, and trial readiness through shared infrastructures and public-private collaboration. Acting as both a scientific and strategic platform\, it ensures that research outcomes translate into tangible benefits for patients across Europe.Through this discussion\, the aim is to illustrate how strategic coordination and data-driven governance can empower rare diseases community in Europe and globally to move from fragmented initiatives to a cohesive\, sustainable ecosystem that directly benefits patients and researchers alike.  \nAbout the Speaker: İlkay Başak Uysal\, Ph.D.\, is a scientific project manager specializing in innovation in healthcare and life sciences. She currently serves on the coordination team of the ERDERA project at INSERM that manages strategic and operational processes within Europe’s rare disease research ecosystem. Başak holds a Ph.D. in women’s sexual and reproductive health\, complemented by strong academic foundations in bioinformatics and molecular biology. Quadrilingual (Turkish\, English\, French\, and German)\, and with over ten years of combined experience in academia and industry\, her expertise spans health research\, public health\, biotechnology\, product strategy\, and market analysis. She has worked with French and European funding proposals\, and strategic scientific planning\, while also developing holistic approaches to women’s health.  Başak is committed to fostering sustainable patient focused health solutions through multidisciplinary collaboration.
URL:https://erdera.org/event/accelerating-innovation-through-coordinated-research-platforms-the-erdera-approach/
CATEGORIES:Accelerator,Clinical Research,Data Hub,Funding,International Alignment
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260602T072658
CREATED:20251001T125433Z
LAST-MODIFIED:20251009T121651Z
UID:10000013-1762128000-1762300799@erdera.org
SUMMARY:XVII Foresight Training Course | From research to access: how does Europe speed up the availability of medicines for unmet needs?
DESCRIPTION:The course will focus on the current status and advancements of clinical research especially to address unmet medical needs. Innovative methodologies\, regulatory challenges\, and the involvement of adolescents in clinical trials will be discussed. The state of the art of funding strategies and investments will be reviewed\, considering public incentives and public-private funds at EU\, national and regional level. Access-related issues\, such as joint procurement\, national policies\, HTA\, and patient involvement in decision-making and access procedures will also be covered. \nAdditional details and registration here.
URL:https://erdera.org/event/xvii-foresight-training-course-from-research-to-access-how-does-europe-speed-up-the-availability-of-medicines-for-unmet-needs/
CATEGORIES:Clinical Research,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE),Training & Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251029
DTSTAMP:20260602T072658
CREATED:20250801T074706Z
LAST-MODIFIED:20251222T141631Z
UID:10000008-1761523200-1761695999@erdera.org
SUMMARY:World Orphan Drug Congress Europe 2025
DESCRIPTION:We’re pleased to announce that ERDERA will be attending #WODC2025 in Amsterdam on 27–28 October\, driving collaboration and advancing research in the field of rare diseases. Come and visit us at our booth 10.512! \nMore information soon.
URL:https://erdera.org/event/world-orphan-drug-congress-europe-2025/
LOCATION:RAI Convention Center\, Europaplein 24\, 1078 GZ Amsterdam\, Netherlands\, Amsterdam\, Netherlands
CATEGORIES:Clinical Research,Funding,International Alignment
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251014T133000
DTEND;TZID=UTC:20251014T173000
DTSTAMP:20260602T072658
CREATED:20251013T060932Z
LAST-MODIFIED:20251222T141620Z
UID:10000015-1760448600-1760463000@erdera.org
SUMMARY:ERDERA-GDI Official Joint Workshop
DESCRIPTION:the ERDERA-GDI Official Joint Workshop\, scheduled to take place on Monday\, 14 October 2025\, from 13:30 to 17:30 CET at the Novotel Paris Centre Tour Eiffel (https://all.accor.com/hotel/3546/index.fr.shtml). In person attendance is highly encouraged but hybrid access for remote participants is also possible. \nThis strategic half-day workshop will convene distinguished contributors from both the European Rare Diseases Research Alliance (ERDERA) and the Genomic Data Infrastructure (GDI) initiatives. The objective is to foster alignment\, disseminate updates\, and explore collaborative opportunities in the use case of rare disease. \n\nWorkshop Objectives\n\nProvide a high-level overview of ERDERA and GDI initiatives\, including current activities and strategic goals\nShare updates on technical progress\, ethical and regulatory aspects\, and national program developments\nDiscuss the Rare Disease Use Case and its relevance for federated analysis and data harmonization\nIdentify opportunities for mutual support and demonstration projects\nDecide action items and outline next steps for continued collaboration\n\n\nParticipants\nThe workshop will bring together representatives from: \n\nERDERA Data Services Hub Workstream (DSH)\nERDERA National representatives from France\, Sweden\, Denmark\nGDI Pillars II and III\n1+MG RD European Working Group\nGenome of Europe\nCAD (Central Data Analyzer)\nELIXIR Europe\n\nConfirmed participants include: Daria Julkowska\, Serena Scollen\, Juan Arenas\, Sergi Beltran Agullo\, Philippe Jean Bousquet\, Julien Thevenon\, Morris Swertz\, Gerieke Been\, Steven Laurie\, Antonio Rausell\, Angela Saenz Monroy\, Manon Lebras\, Bengt Persson\, Frédérique Nowak\, Gisele Bonne\, Emmanuelle Genin\, Salvador Capella Gutierrez\, Carles Hernandez-Ferrer\, Dylan Spalding. \nLocation: Novotel Paris Centre Tour Eiffel. 61 quai de Grenelle\, 75015 PARIS\, France \nHybrid Access: Join the meeting here \nMeeting ID: 368 170 006 413 \nPasscode: zC7ks2UH \n\nAgenda\nWelcome & Opening Remarks (5min) \nERDERA and GDI Overview/Initiatives (25 min) \n\nSpeakers: Daria Julkowska\, Serena Scollen\n\nCurrent Status & Future Plans (1h 15 min) \n\nContent: Updates\, ongoing work\, and strategic direction\nChairs: Bengt Persson\, Julien Thevenon\nSpeakers:\n\nGDI Ethics and regulatory aspects\, Juan Arenas (10 minutes)\nGDI current status\, technical overview and future plans\, Dylan Spalding (10min)\n1+MG RD Use Case\, Sergi Beltran Agullo (10min)\nQuestions & Answers for GDI/1+MG (5min)\nERDERA DRW overview\, Lisenka Vissers (10min)\nERDERA RD federated analysis use case (10min)\nERDERA DSH: the current status and technical overview\, Morris Swertz (10min)\nQuestions & Answers for ERDERA (5min)\n\n\n\nCoffee Break (30min) \nCurrent Status & Future Plans – cont. (20 min) \n\nGDI/ERDERA update per country (current status and future plans of national personalized genomic medicine programmes\, data management\, data analysis)\n\nFrance (Philippe Jean Bousquet\, Frédérique Nowak) (5min)\nSweden (Bengt Persson) (5min)\nDenmark (Asuman Zeynep Tümer) (5min)\nJoint Q&A (5min)\n\n\n\nDiscussion: Opportunities for Mutual Support & Demonstration Projects (1h) \n\nFocus: Collaboration\, project opportunities\, and use case discussion\nCo-chairs: Sergi Beltran Agullo\, Carles Hernandez-Ferrer\n\nAction Planning & Wrap-Up (including Closing Remarks) (20 min) \n\nFinalize action items\, responsibilities\, and next steps.\nChairs: Morris Swertz\, Juan Arenas
URL:https://erdera.org/event/7853/
LOCATION:Novotel Paris Centre Tour Eiffel\, 61 quai de Grenelle\, Paris\, 75015\, France
CATEGORIES:Accelerator,Clinical Research,Data Hub,ERDERA,Expertise Services
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251009
DTEND;VALUE=DATE:20251012
DTSTAMP:20260602T072658
CREATED:20250813T132319Z
LAST-MODIFIED:20251009T121719Z
UID:10000012-1759968000-1760227199@erdera.org
SUMMARY:15th Balkan congress of human genetics and 3rd Alpe Adria meeting of human genetics
DESCRIPTION:The 15th Balkan Congress of Human Genetics and the 3rd Alpe Adria Meeting of Human Genetics will take place from 9–11 October 2025 at the Rikli Balance Hotel\, Bled\, Slovenia. This joint event will gather leading regional and European experts to present the latest advances in human genetics\, with a focus on cutting-edge sequencing technologies\, predictive genomics\, and harmonisation of practice guidelines across Europe. \nThe scientific programme will feature invited lectures\, short presentations\, and posters covering a wide range of fields\, including genomic medicine\, rare diseases\, pharmacogenomics\, oncogenetics\, reproductive genetics\, population genetics\, and multifactorial disorders. \nBringing together excellence in research and practice\, the congress aims to foster collaboration\, knowledge exchange\, and progress in contemporary medical genetics. \nView the programme here.
URL:https://erdera.org/event/15th-balkan-congress-of-human-genetics-and-3rd-alpe-adria-meeting-of-human-genetics/
LOCATION:Rikli Balance Hotel Bled\, Slovenia\, Rikli Balance Hotel\, Bled\, Slovenia
CATEGORIES:Clinical Research,ERDERA
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260602T072658
CREATED:20251125T113725Z
LAST-MODIFIED:20251125T113725Z
UID:10000025-1748908800-1749081599@erdera.org
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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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250304
DTEND;VALUE=DATE:20250305
DTSTAMP:20260602T072658
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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