We are thrilled to announce the launch of the European Joint Programme on Rare Diseases (EJP RD) survey aimed at assessing the knowledge and impact of Rare Diseases research (data) […]
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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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Read More“Earlier, faster and more accurate diagnosis” We are delighted to share the results of the the recent Rare Barometer survey, developed by the IRDiRC PACC member organization EURORDIS-Rare Diseases Europe, […]
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A new publication about incorporating Spinal Muscular Atrophy (SMA) in newborn screening programs across Europe is now available in the Rare Disease and Orphan Drugs Journal. The paper highlights how […]
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The European Commission has published a new Guidance on clinical evaluation of orphan medical devices on June 26th. Orphan devices are medical devices or their accessories, which are intended to be […]
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IRDiRC announces the launch of a new paper on “Newborn screening in Mexico and Latin America: present and future”, part of the Newborn Screening Initiative Real-World Applications and Technologies special […]
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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 Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal year (FY) 2025 to support clinical trials for rare […]
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Despite advancements, most rare diseases lack effective therapies, underscoring the necessity for a strategic overhaul in the approach to research and development. To address the multifaceted challenges in rare disease […]
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