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 languages, from 10 July to 8 September. More information about the survey: Where can I find the survey and in how many languages is it […]
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, which shows that the average rare disease patient in Europe waits nearly five years for a diagnosis. Check out more details about this survey’s findings […]
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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 edition, now fully available in the Rare Disease and Orphan Drugs Journal. “The first newborn screening program (NBS) to be implemented in Latin America was […]
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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 diseases and conditions. The purpose of this funding opportunity announcement is to fund clinical trials of products evaluating efficacy and/or safety in support of a […]
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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 research, a unified framework that encompasses the recommendations across clinical trials, diagnostics, and translational research is proposed by the Rare Disease Moonshot. Central to this […]
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A new IRDiRC paper on “Global health for rare diseases through primary care”, the work of the IRDiRC Primary Care Task Force, is now available open access in the The Lancet Global Health: https://lnkd.in/e_6_Rczr. The Task Force brought together a multi-stakeholder group of experts to assess the priority research areas in primary care. “Family medicine […]
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The European Joint Programme on Rare Diseases is organizing and End-User Training intended for potential users of the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar2 activities. At the end of this webinar, you will be able to: Describe how to interact with the Virtual Platform as a […]
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We are delighted to join the ICMRA ‘Rare’ Symposium and Workshop 2024, a multi-stakeholder event focusing on rare diseases organized by the International Coalition of Medicines Regulatory Authorities (ICMRA) and hosted by Swissmedic. This exclusive symposium is open to selected stakeholder organizations and regulators, providing a unique platform to discuss and address the pressing challenges […]
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Welcome to the pinnacle event in rare diseases research, the RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March 5th to 7th, 2025, we will gather in the vibrant city of Brussels (Belgium) for an […]
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Lyfe Languages is happy to announce that its Universal Medical Translator is now available via the link https://www.lyfelanguages.com/ Lyfe Languages is an open-source online platform that translates medical terminologies into Indigenous languages. It is led by young Indigenous Language Champions, who work with their elders on translations. Culturally appropriate Indigenous text and audio translations are […]
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