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DTSTART;VALUE=DATE:20260603
DTEND;VALUE=DATE:20260605
DTSTAMP:20260603T044740
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SUMMARY:European Conference on Rare Diseases and Orphan Products (ECRD) 2026
DESCRIPTION:Save the date! The next ECRD will be held on 3 & 4 June 2026 in Prague and will be titled “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”.  \nThe European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led policy-shaping event on rare diseases in Europe. \nBy bringing together people living with rare diseases and patient advocates alongside policymakers\, healthcare industry representatives\, clinicians\, regulators\, and Member State officials\, EURORDIS leverages the strength of this unique network to advance goal-driven policies that improve the lives of people living with a rare disease and their families. \nECRD 2026 is expected to unite over 500 participants in Prague\, with an additional 300+ joining online. Thanks to its hybrid format\, the conference will provide an unparalleled platform for connection and collaboration\, enabling participants across the rare disease community to exchange knowledge\, share experiences\, and build partnerships. \nPatient groups\, academics\, healthcare professionals and other interested parties who have conducted research or studies on rare diseases or public health projects are encouraged to submit a poster abstract for the ECRD 2026. \nThe submission form and detailed information on the guidelines and criteria can be found here.
URL:https://www.bbmri-eric.eu/events/european-conference-on-rare-diseases-and-orphan-products-ecrd-2026/
LOCATION:Prague & online
CATEGORIES:Conference
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DTSTART;TZID=Europe/Paris:20260603T103000
DTEND;TZID=Europe/Paris:20260603T113000
DTSTAMP:20260603T044740
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SUMMARY:ELSI Dialogues: Cancer survivorship at the core of research
DESCRIPTION:Cancer survivorship at the core of research: How lived experiences can inform research and policy decisions in the Era of the EU Cancer Mission\nDate/Time:\nJune 3\, 2026. H 10.30/11.30 CEST – ONLINE (ZOOM) \n🔗 Register here \n  \nDescription\nCancer survivorship is rapidly emerging as a central dimension of contemporary oncology\, reflecting not only advances in early detection and treatment but also the growing recognition of survivors as key stakeholders in research\, policy\, and care design. \nIn alignment with the objectives of the EU Mission on Cancer\, which aims to improve the lives of more than 3 million people affected by cancer by 2030\, this webinar places cancer survivors at the core of a multidisciplinary dialogue on research governance\, ethical responsibility\, and patient rights. \nHeld in proximity to Cancer Survivors Day\, which is observed internationally and this year will be celebrated on June 7\, 2026\, the event will explore how survivorship challenges reshape the research agenda across the entire cancer continuum. \nBeyond clinical outcomes\, cancer survivors face long-term physical\, psychological\, social\, and economic consequences\, including barriers to employment\, insurance\, and full societal participation. These realities raise critical questions about equity\, data use\, informed consent\, and the fair distribution of innovation. \nBringing together some cancer survivors\, expert advocates and a bioethicist\, the webinar examines how lived experience can and should inform regulatory frameworks\, research priorities\, and ethical standards. Particular attention will be paid to the role of survivors in co-creating research\, the governance of health data within the evolving European regulatory landscape\, and the ethical implications of emerging technologies in oncology. \nWe believe in a more inclusive\, participatory\, and ethically grounded model of cancer research\, which recognizes survivors not merely as subjects of study\, but as agents of change within the European cancer ecosystem. \n  \nSpeakers: \n\n Virginia Sanchini (Assistant Professor of bioethics\, Department of Oncology and Hemato-Oncology\, University of Milan\, Italy; Visiting Professor\, Center for Biomedical Ethics and Law\, KU Leuven\, Leuven\, Belgium)\n Maria Theodoridou (Secretary of the Board of Directors of ELLOK Hellenic Cancer Federation and President of the Cancer Patient Support Association “Living well with Cancer” in Heraklion\, Crete)\n Richard Stephens (cancer survivor\, co-Chair of the UK’s national research group into Living Well with and beyond Cancer)\n Merel Hennink (Secretary of the Board of Cancer Patients Europe\, expert advocate)\n\nModerators: \nDr. Melanie Goisauf (BBMRI-ERIC)\, Dr. Zisis Kozlakidis (IARC/WHO) \nThis webinar is offered by ELSI Services & Research Department at BBMRI-ERIC. \n  \nRegistration link:  https://cesnet.zoom.us/webinar/register/WN_IJo7SnfUSsGiF8ccccDg7Q#/registration
URL:https://www.bbmri-eric.eu/events/elsi-dialogues-cancer-survivorship-at-the-core-of-research/
CATEGORIES:BBMRI Events,Webinar
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