Category: Non classé

The European Conference on Rare Diseases & Orphan Products (ECRD)

IRDiRC is an associate partner of the ECRD. The event is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. The event draws together more than 800 participants from over 50 countries around the world. Leading, inspiring and engaging all stakeholders to […]

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Yakup’s Journey to Hope

“Yakup’s Journey to Hope” was created in collaboration with the GA4GH Driver Project and The European Joint Programme on Rare Diseases (EJP RD). Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. The video premiere was at the GA4GH plenary 2019. Patient can […]

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Have your say and contribute to the strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe!

The goal is to create a unique platform that does not exist anywhere else, a European multi-sector Partnership for health innovation Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda […]

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Dr. Annemieke Aartsma-Rus’s video on IRDiRC

Dr. Aartsma-Rus is a professor in translational genetic and a member of IRDiRC Therapies Scientific Committee. In this video she tells us why IRDiRC is needed in the rare disease field and why it is important have different stakeholders collaborating. IRDiRC does it and all its members are committed to reach the new IRDiRC goals […]

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RE(ACT) Congress – IRDiRC Conference

11 – 14 March 2020. Berlin, Germany EARLY REGISTRATION IS OPEN, SUBMIT YOUR ABSTRACT! The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, are glad to announce the RE(ACT) Congress and IRDiRC Conference 2020 – Berlin, Germany 11-14 March.This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together […]

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IRDiRC’s State of Play of research report

The International Rare Diseases Research Consortium (IRDiRC)’s report “State of Play of Research in the Field of Rare Diseases: 2015-2018” is a compilation of information published in scientific journals and press releases over the period of September 2015 to June 2018. The report aims to inform stakeholders at large of developments in the field of […]

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Task Force Openning

The Diagnostic Scientific Committee (DSC) is establishing a Task Force on to address barriers to the diagnosis of rare diseases for Indigenous peoples, so as to help address critical areas that will need to be served if IRDiRC Goal 1 is to be met. The Indigenous Population Task Force will bring together the community addressing this challenge […]

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Rare Disease Day 2019!

The International Rare Diseases Research Consortium support Rare Disease Day 2019! The recent elected Chair and Vice Chair of IRDiRC, Dr Lucia Monaco and Dr David Pearce, and the accompanying Scientific Secretariat raise their hands for the cause during a meeting at the Italian Telethon Foundation dedicated to set the consortium strategy for achieving its goals […]

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