The Funders Constituent Committee (FCC) have set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors. This will be accomplished through survey and systematic review of existing models of telehealth, […]
Read MoreThe 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’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 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 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 […]
Read MoreIRDiRC 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 […]
Read MoreThe 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 […]
Read MoreAs 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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