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DTSTART;TZID=Europe/Dublin:20261113T100000
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DTSTAMP:20261006T085854Z
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SUMMARY:Why Rare Diseases Matter for Europe's Future Embedding Research and Innovation as Standard of Care in Rare Disease
DESCRIPTION:Embedding Research and Innovation as Standard of Care in Rare Diseases \nResearch as Care: Why Rare Diseases Matter for Europe’s Future will take place on 13 November 2026 in Dublin as an event associated with Ireland’s Presidency of the Council of the European Union. \nOrganised by Rare Diseases Ireland and EURORDIS–Rare Diseases Europe\, the event will examine how research and innovation can be embedded as part of the standard of care for rare diseases. It is being held in collaboration with Debra Ireland\, the Irish Platform for Patient Organisations\, Science and Industry (IPPOSI)\, the Neurological Alliance of Ireland (NAI)\, and the Nicolaides-Baraitser Syndrome (NCBRS) Worldwide Foundation. \nAcross three sessions\, the programme will address the Biotech Act\, research and innovation as standard of care\, and the call for a European Action Plan on Rare Diseases. It will consider how patient partnership can make research more relevant and how rare disease research and innovation can contribute to health outcomes and Europe’s life sciences ecosystem. \nThe event takes place during Ireland’s 2026 Presidency of the Council of the European Union and within an active EU legislative period covering the Biotech Act\, medical device and in vitro diagnostic regulation simplification\, the Critical Medicines Act and the EU pharmaceutical package.
URL:https://erdera.org/event/research-as-care-why-rare-diseases-matter-for-europes-future-embedding-research-and-innovation-as-standard-of-care-in-rare-disease/
LOCATION:Radisson Blu Royal Hotel Dublin\, Ireland
CATEGORIES:Patient Public Involvement and Engagement (PPIE),Policy and Regulation
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/10/55368871168_7b6ccf6d76_c.jpg
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DTSTART;VALUE=DATE:20270607
DTEND;VALUE=DATE:20270611
DTSTAMP:20260901T132033Z
CREATED:20260729T092052Z
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UID:10000047-1812326400-1812671999@erdera.org
SUMMARY:Open Academy x ERDERA Schools
DESCRIPTION:Join us in Barcelona on 7-10 June 2027 and gain the knowledge\, skills and confidence to strengthen your advocacy work in medicines development and pre-clinical research. The final dates will be announced soon. Open Academy x ERDERA Schools offer a blended learning approach combining these formats. Our programme is developed with expert trainers identified from the research\, regulatory\, industry and patient community to build competence and provide support and advice. \nFind out more here.
URL:https://erdera.org/event/two-open-academy-schools-one-week-of-face-to-face-training-bringing-researchers-and-patient-representatives-together-for-parallel-and-joint-sessions/
CATEGORIES:ERDERA,Patient Public Involvement and Engagement (PPIE),Training and Education
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