News

Call for Experts for Primary Care Task Force

Primary Care Task Force on “Identifying Key Challenges and Opportunities to Advance IRDiRC Goals with Focus on Primary Care”  The Diagnostics Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and  Funders Constituent Committee (FCC) have set up a joint Task Force to identify challenges and opportunities in rare diseases research focusing on primary care. This may include diagnosis, therapies, […]

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Call for Experts for Primary Care Task Force

Primary Care Task Force on “Identifying Key Challenges and Opportunities to Advance IRDiRC Goals with Focus on Primary Care”  The Diagnostics Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and  Funders Constituent Committee (FCC) have set up a joint Task Force to identify challenges and opportunities in rare diseases research focusing on primary care. This may include diagnosis, therapies, […]

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IRDiRC at the National Press Foundation’s two-day workshop

IRDiRC members Lucia Monaco (Consortium Assembly Chair), Daria Julkowska, Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser, and Ritu Jain will be discussing IRDiRC at a global scale during the upcoming two-day online workshop entitled “Covering Rare Diseases” to be held on September 13th and 14th and organised by the National Press Foundation. Registration […]

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IRDiRC at the National Press Foundation’s two-day workshop

IRDiRC members Lucia Monaco (Consortium Assembly Chair), Daria Julkowska, Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser, and Ritu Jain will be discussing IRDiRC at a global scale during the upcoming two-day online workshop entitled “Covering Rare Diseases” to be held on September 13th and 14th and organised by the National Press Foundation. Registration […]

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New IRDiRC Recognized Resource: Cellosaurus

IRDiRC has recently accepted a new Recognized Resource, the Cellosaurus, a knowledge resource on cell lines aiming to describe all cell lines used in biomedical research. The Cellosaurus provides information for about 130,000 cell lines and 25% of these cell lines are established from rare disease patients. For each cell line the Cellosaurus provides a […]

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New IRDiRC Recognized Resource: Cellosaurus

IRDiRC has recently accepted a new Recognized Resource, the Cellosaurus, a knowledge resource on cell lines aiming to describe all cell lines used in biomedical research. The Cellosaurus provides information for about 130,000 cell lines and 25% of these cell lines are established from rare disease patients. For each cell line the Cellosaurus provides a […]

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U.N. Political Forum 2021 High-Level Side Event: Addressing the challenges of persons living with a rare disease

The United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled “On the road towards COVID-19 recovery & delivery of the Sustainable Development Goals – Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority” along with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS. The fully online event will […]

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EC publishes draft Strategic Research & Innovation Agenda (SRIA) for the Innovative Health Initiative (IHI)

As one of the joint undertakings under Horizon Europe, a draft Strategic Research & Innovation Agenda (SRIA) for the Innovative Health Initiative (IHI) has been published on the European Commission (EC) website. IHI will build on the successes of and lessons learnt from the Innovative Medicines Initiative (IMI). The goal of IHI is to help create an EU-wide health research and innovation ecosystem that facilitates the translation of […]

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