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DTSTART;TZID=Europe/Madrid:20261021T143000
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UID:10000050-1792593000-1792603800@erdera.org
SUMMARY:ERDERA’s Open Session – 3rd General Assembly Meeting
DESCRIPTION:The ERDERA consortium will come together in Coimbra\, Portugal\, for its third General Assembly Meeting\, marking the end of the partnership’s second year and providing an opportunity to review progress\, deepen discussions and strengthen collaboration. ERDERA will also welcome the wider rare diseases community to its free Open Session\, broadcasted live online. \n\nDedicated to ultra-rare diseases\, the session will share inspiring research and patient stories while examining innovative methodological and regulatory approaches to clinical research and treatment development. It will connect these developments with ERDERA’s work and its commitment to advancing research alongside patients\, with the shared goal of improving the lives of people living with rare diseases. \nThe session is free to attend\, but registration is required. \n  \nOpen session agenda \nTimes are in WEST (Portugal time) \n13:30 – 14:15 – Welcome Speeches\n\nJoão Ramalho-Santos\, Vice-Rector for Research\, University of Coimbra\nDaria Julkowska\, PhD. ERDERA Coordinator\, INSERM\nDusan Sandor\, European Commission\, DG Research and Innovation\, HaDEA\n\n14:15 – 15:00 – Keynote speech (Remote) – Investigator-Initiated Path to Genetically-Targeted Therapies in Prion Disease: A Patient-Scientist Case Study\n\nPr. Sonia Vallabh\, PhD. Director\, Prion Therapeutic Science\, Broad Institute\, Boston MA\, USA (remote)\n\n15:00 – 15:45 – Keynote speech (Remote) – “Regulatory Preparedness for the Next Generation of Rare Disease Therapies: Innovation\, Evidence and Patient-Centered Development “\n\nJulian Beach\, Medicines and Healthcare products Regulatory Agency\, UK (remote)\n\n15:45 – 16:30 – Keynote speech: European frame work for N-of-1 treatments\n\nAnnemieke Aartsma-Rus\, PhD. Professor of translational genetics. Department of Human Genetics. Leiden\, Netherlands\n\n 
URL:https://erdera.org/event/erderas-open-session-3rd-general-assembly-meeting/
CATEGORIES:ERDERA
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/09/October-2026-5.png
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DTSTART;VALUE=DATE:20261026
DTEND;VALUE=DATE:20261029
DTSTAMP:20260918T064938Z
CREATED:20260226T123002Z
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UID:10000041-1792972800-1793231999@erdera.org
SUMMARY:World Orphan Drug Congress Europe 2026
DESCRIPTION:The World Orphan Drug Congress is the largest orphan drug & rare disease meeting of its kind across the globe. From cell and gene therapy\, genetic testing\, and market access\, to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress. \n\n26th October 2026 | Pre-Congress Workshops\n27th – 28th  October 2026 | Main Congress Days\nLocation: RAI Congress Centre\, Amsterdam
URL:https://erdera.org/event/world-orphan-drug-congress-europe-2026/
CATEGORIES:ERDERA
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/02/1.jpg
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