The Chan Zuckerberg Initiative (CZI) has launched a Request for Information (RFI): Patient Registry Data Interoperability as part of the Rare As One project, aimed at mapping data interoperability challenges and support ideas that will make it easier for patient communities to share data with researchers, and for researchers to fully leverage patient voices in research. The RFI has been built after extensive […]
Read MoreFDA
Read MoreFDA’s Office of Orphan Product Development (OOPD) has opened grant opportunity to support efficient and innovative natural history studies that advance medical product development in rare diseases with unmet needs. Through the support of natural history studies with high quality and interpretable data elements, FDA expects to address critical knowledge gaps, remove major barriers to […]
Read MoreYesterday marked the official launch of Screen4Care which is a new EU Research Project focussed on accelerating diagnosis for Rare Disease patients through genetic newborn screening and advanced analysis methods such as machine learning and Artificial Intelligence. The project will run for a period of five years with a total budget of EUR 25 million provided by the Innovative Medicines Initiative (IMI 2 JU), a joint undertaking […]
Read MoreYesterday marked the official launch of Screen4Care which is a new EU Research Project focussed on accelerating diagnosis for Rare Disease patients through genetic newborn screening and advanced analysis methods such as machine learning and Artificial Intelligence. The project will run for a period of five years with a total budget of EUR 25 million provided by the Innovative Medicines Initiative (IMI 2 JU), a joint undertaking […]
Read MoreThe Food and Drug Administration
Read MoreThe Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for fiscal years (FY) 2021 – FY 2022 to support innovative and efficient clinical trials for rare diseases and conditions. These studies are intended to provide acceptable data to the FDA that will substantially contribute to the […]
Read MorePrimary 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, […]
Read MorePrimary 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, […]
Read MoreIRDiRC 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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