Category: IRDiRC

ICMRA ‘Rare’ Symposium 2024

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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New publications: Introducing the DUC Framework and Common Use Condition Elements

We proudly announce two ground-breaking publications that help pave the way for the future of research data sharing and information governance 1) Getting your DUCs in a row – standardising the representation of Digital Use Conditionshttps://www.nature.com/articles/s41597-024-03280-6 This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data, healthcare […]

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Breaking the Rare Disease Deadlock through Multi-Stakeholder Collaboration

This 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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Mark your calendars for RE(ACT) Congress 2025!

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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The Orphan Disease Center – Million Dollar Bike Ride

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 NINDS Nonprofit Forum

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 – Universal Medical Translator now available

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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Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data

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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Mark your calendars for WODC USA!

Only 8 days to go until the World Orphan Drug Congress USA 2024 in Boston (MA, USA, date: April 23-25). The WODC USA presents a golden opportunity to showcase the impactful work we’re doing and explore how collaborative efforts are shaping the future of rare disease research. Reserve your spot at the globally defining event […]

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Alexion – NMOSD Mental Health Study

“My care team consists of over 30 healthcare professionals and I can’t recall even one time where one of them asked me about my mental health” (60 y.o. female patient). Alexion is partnered with Thomas Jefferson University to assess and address mental health among Neuromyelitis Optica Spectrum Disorder (NMOSD) patients. Phase 1 of the partnership was a research study titled The […]

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