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DTSTART;TZID=UTC:20251216T150000
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DTSTAMP:20260429T211721
CREATED:20251021T083545Z
LAST-MODIFIED:20251222T145455Z
UID:10000021-1765897200-1765904400@erdera.org
SUMMARY:Information Webinar - ERDERA Joint Transnational Call 2026
DESCRIPTION:This online webinar will introduce the forthcoming 2026 Joint Transnational Call\, “Resolving unsolved cases in rare genetic and non‑genetic diseases”. Participants will hear how the call fits within ERDERA’s Funding workstream and how it will support multinational\, interdisciplinary projects focused on delivering diagnostic clarity for people living with a rare disease. \nIt will outline scope\, eligibility\, timelines and expectations for patient partnership\, and signpost where to find national/regional rules and submission guidance. \nThe session will also cover how ERDERA’s services and networks can strengthen proposals. A short presentation will introduce ERDERA and its hubs\, including how the Clinical Research Network enhances diagnostic pathways and trial readiness by linking expert centres and harmonising procedures\, the Data Services Hub supports secure\, FAIR data sharing and analysis\, and the Expertise Services Hub offers practical guidance on study design\, regulatory pathways and methods. A dedicated segment on patient engagement will explain how meaningful PPIE is embedded throughout the call—from co‑defining priorities to governance and reporting—so that projects respond to patient‑need and drive real‑world impact. \nPreliminary agenda: \n\nPresentation of ERDERA: who we are and how our hubs support research across Europe;\nJTC 2026 introduction: scope\, eligibility\, timelines and evaluation;\nPatient engagement in research: expectations\, good practice and support for PPIE;\nExpertise support services: how to access methodological\, regulatory and clinical guidance to strengthen your consortium and proposal.\n\nPlease note that spots for this event are limited. If the link does not allow you to register\, please keep checking this website for further updates on how to receive the recording of the event.
URL:https://erdera.org/event/information-webinar-erdera-joint-transnational-call-2026/
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,Funding
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LOCATION:
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251114
DTEND;VALUE=DATE:20251117
DTSTAMP:20260429T211721
CREATED:20251014T085900Z
LAST-MODIFIED:20251014T085900Z
UID:10000019-1763078400-1763337599@erdera.org
SUMMARY:ICORD2025 - International Collaboration on Rare Diseases and Orphan Drugs
DESCRIPTION:The XVII International Conference of ICORD (International Collaboration on Rare Diseases and Orphan Drugs) will take place on 14–16 November 2025 at the Sabancı Cultural Center\, Dokuz Eylül University\, İzmir\, Türkiye. Led by the Organising Committee chaired by Prof Uğur Özbek from the İzmir Biomedicine and Genome Center (IBG)\, the meeting will convene researchers\, healthcare professionals\, patient advocates and policymakers to share knowledge and advance collaboration for better diagnosis\, treatment and care for people living with a rare disease. \nWhy this matters for Europe’s rare disease agenda\nICORD is a long‑standing forum for practical exchange across disciplines and borders. Its 2025 programme is expected to spotlight advances in clinical research readiness\, data‑driven discovery\, and access to therapies—topics that align closely with ERDERA’s mission to accelerate patient‑centred research and innovation across Europe. By connecting international partners with European Reference Networks\, academia\, SMEs and industry\, the conference supports earlier and more accurate diagnosis\, better trial design\, and faster translation of research into real‑world benefits.
URL:https://erdera.org/event/icord2025-international-collaboration-on-rare-diseases-and-orphan-drugs/
LOCATION:Sabancı Cultural Center\, Yeşiltepe\, Mustafa Kemal Sahil Blv. No:25\, Izmir\, 35260\, Turkey
CATEGORIES:Clinical Research,Data Hub,ERDERA,Expertise Services,International Alignment,Patient Involvement (PPIE)
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251030T090000
DTEND;TZID=UTC:20251030T232000
DTSTAMP:20260429T211721
CREATED:20250808T125359Z
LAST-MODIFIED:20251010T111046Z
UID:10000011-1761814800-1761866400@erdera.org
SUMMARY:ERDERA’s Open Session - 2nd General Assembly Meeting
DESCRIPTION:ERDERA will mark its 1st anniversary with a stimulating online event open to the entire rare disease community. Leading experts in the field of neurology\, neurometabolic diseases and patient advocacy will take the floor next 30 October\, from 09:00 to 11:20 CET\, bringing both scientific and lived experience to the table. The session is free to attend\, but registration is required. Register here. \nAgenda \n09:00 – 09:10 | Welcome speeches\n• Yvo Roos\, UMC Board Member\, Amsterdam\, The Netherlands\n• Daria Julkowska\, ERDERA Coordinator\, INSERM\, Paris\, France  \n09:10 – 10:00 | Keynote speech (remote)\n• Fanny Mochel\, Director\, Reference Centre for Neurometabolic Diseases\,\nLa Pitié-Salpêtrière Hospital – APHP-Sorbonne University\, Paris\, France  \n10:00 – 10:50 | Keynote speech\n• Bojana Mirosavljevic\, Founder\, Zivot-Life Association\, Belgrade\, Serbia  \n10:50 – 11:20 | One year of ERDERA achievements\n• Daria Julkowska\, ERDERA Coordinator\, INSERM\, Paris\, France  \nInspiring speakers  \n\nFanny Mochel – Professor of Genetics at Sorbonne University\, Mochel leads national reference centres for neurometabolic diseases and leukodystrophies in adults and co-leads the MIND team at the Paris Brain Institute. Her research focuses on brain energy deficiencies\, identifying biomarkers through metabolomics and metabolic imaging\, and developing therapeutic approaches targeting the Krebs cycle. Recently\, she has explored the links between physics and metabolism in brain function and disease. Her work in identifying biomarkers and developing novel treatment strategies reflects ERDERA’s commitment to accelerating scientific discovery and improving patient outcomes. \nBojana Mirosavljević – An internationally recognised rare disease advocate\, scientist\, and patient leader\, Bojana founded the “Life” patient association for children with rare diseases and championed Zoya’s Law\, ensuring early diagnosis and improved care for over 4\,000 patients. With a background in chemistry\, reproductive biology\, and embryology\, she has presented at the European Parliament\, United Nations\, and over 150 global conferences. Currently\, she directs Advocacy Strategy at ICON’s Center for Rare Diseases\, embedding patient perspectives in research and clinical trials worldwide. Her tireless efforts to embed the patient voice into clinical research exemplify ERDERA’s dedication to empowering communities and shaping research that meets real patient needs. \nYvo Roos – Professor of Acute Neurology and dean of the medical faculty at the University of Amsterdam\, Roos pioneered acute stroke care through the founding of the Acute Brain Care Unit in 1996. He has co-led landmark trials including MRCLEAN\, MRCLEAN No-IV\, and DIRECT MT\, and leads large research collaborations such as the CONTRAST consortium and CINTICS. With over 450 publications and multiple prestigious awards\, his work has shaped stroke care and research internationally. His work mirrors ERDERA’s vision of fostering multi-centre\, cross-disciplinary collaborations to translate research into meaningful clinical impact. \nDaria Julkowska – Scientific Coordinator of the European Rare Disease Research Alliance (ERDERA) and Assistant Director of the Thematic Institute for Genetics\, Genomics & Bioinformatics at INSERM\, with over 15 years of experience in research and management. Julkowska has developed and implemented collaborations between European research networks\, infrastructures\, and patient organisations. With a PhD in Molecular Biology\, postdoctoral experience in cellular biology\, and an MSc in Management of Research\, she combines scientific expertise with strategic coordination to advance rare disease research across Europe. \n\nRegister now! \nDon’t miss the chance to be part of an inspiring occasion at the ERDERA Open Session on 30 October 2025\, from 09:00 to 11:20 CET.      \nThe session is free to attend\, but registration is required. You can register to attend the open session here.
URL:https://erdera.org/event/erderas-open-session-nd-general-assembly-meeting/
CATEGORIES:ERDERA
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251014T133000
DTEND;TZID=UTC:20251014T173000
DTSTAMP:20260429T211721
CREATED:20251013T080932Z
LAST-MODIFIED:20251222T151620Z
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251009
DTEND;VALUE=DATE:20251012
DTSTAMP:20260429T211721
CREATED:20250813T152319Z
LAST-MODIFIED:20251009T141719Z
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250605
DTSTAMP:20260429T211721
CREATED:20251125T123725Z
LAST-MODIFIED:20251125T123725Z
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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