IRDiRC’s Patient Advocacy Constituent Committee member, EURORDIS-Rare Diseases Europe is organizing a new edition of the European Conference on Rare Diseases & Orphan Products (ECRD), the largest patient-led policy-shaping event on rare […]
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Exciting news from the IRDiRC PACC member EURORDIS! The Rare Barometer survey on the impact of rare diseases on daily life is now open. Open worldwide and available in 25 […]
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Listen now to EURORDIS RARE ON AIR latest episode, where Julien Poulain (Communication Manager at EURORDIS) speaks with Ayça Şahin, a PhD student in neuroscience living in Turkey with Spinal […]
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The European Conference on Rare Diseases & Orphan products (ECRD) is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork […]
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The 2024 edition of the Open Academy Schools will take place in-person on 3-7 June in Barcelona. The face-to-face intensive week of the Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School) […]
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Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with […]
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“Rare on air” is a series of monthly podcasts developed by EURORDIS showcasing different interviews with people who live with a rare diseases, advocates and experts on rare disease policy. […]
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The EURORDIS Open Academy has launched a survey to know more about training needs, such as the reasons for engaging in training, main topics of interest, and the roadblocks that […]
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EURORDIS is pleased to announce that nominations for the EURORDIS Black Pearl Awards are now open until September, 4th. The Awards are presented to patient advocates and organisations, policy makers, scientists, companies, and media in recognition […]
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