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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A new paper developed by the IRDiRC Diagnostics Scientific Committee on “Addressing Diagnostic Gaps and Priorities of the Global Rare Diseases Community: Recommendations from the IRDiRC Diagnostics Scientific Committee”, has been recently published in the European Journal of Medical Genetics, as part of the Special Edition on “Globally Trending Topics in Rare Diseases”, having as […]
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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 […]
Read MoreThis week, IRDiRC will be represented at the BIO International Convention San Diego (USA) by Deborah Requesens (Director, JumpStart Program, Orphan Disease Center, USA), who will be speaking in the session Breaking the Rare Disease Deadlock through Multi-Stakeholder Collaboration on Wednesday, 5th June, from 11:00 AM to 12:00 PM local time. Have a look at […]
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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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Every year, the Orphan Disease Center offers research opportunities focused on over 30 different rare diseases. This one-year grant program to support research related to a rare disease is supported by the Million Dollar Bike Ride. This event will take place on June 8th 2024 in Philadelphia (USA) and registration is open for this year […]
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The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff. The 2024 NINDS Nonprofit Forum will take place July 23-24 virtually and in person at […]
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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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Connect4Children (c4c), funded by the Innovative Medicines Initiative 2 Joint Undertaking, a public–private partnership between the European Union and the European pharmaceutical industry, has just released a publication on the need for standardized disease-specific data and reviewed multiple initiatives, data resources, and data standards that could be utilised for this purpose. It is widely recognised […]
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