ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA website Research Wall (Please note that the current page only contains examples) It provides basic information about the…
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RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease. This survey aims to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey. This is a global survey, available in 26 languages.…
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The GA4GH Data Access Committee Review Standards subgroup has put together a brief survey on implementation factors when using software or other automated decision tools to support Data Access Committee review. The survey should take no longer than twenty minutes. Please complete the survey by 31 May, 2022. Start Survey Additional Information This study is part of a…
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EJP RD is glad to announce today (May 2nd) the opening of the call for Research Mobility Fellowships, which aims to support PhD students, postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. The exchange can be carried out (1) within the same ERN (Full Members…
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A funded networking event “Treat AIE: First European networking conference to provide guidelines and improve treatment of Autoimmune Encephalitis” is being organised to foster collaboration and improve the future of Autoimmune Encephalitis (AIE). This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the third round of funding…
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The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the French Foundation for Rare Diseases starts TODAY (April 18th)! Registrations are free and open at this link. We specifically encourage medical and biomedical science students to register…
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The Share4Rare Consortium is organising a webinar to discuss the potential of clinical imaging in rare disease diagnosis and research. The guest speaker will be Dr. Josep Munuera, radiologist and Head of the Quality, Innovation and Research Section of the Diagnostic Imaging Service at Hospital Sant Joan de Déu Barcelona, Spain. The webinar will take place on April 20th from 17.00 – 18.00 CET.…
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A recent report of the joint action Towards the European Health Data Space (TEHDAS) examines EU-level and national funding for health data collection, access and use for secondary purposes, such as research. To ensure the economic sustainability of the forthcoming European health data space (EHDS), the EU and the member states will need to solve how…
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A recent report of the joint action Towards the European Health Data Space (TEHDAS) identifies a minimum set of technical services – basic software items – required for the cross-border secondary use of health data in Europe. The secondary use of health data involves using health data, such as patient records, for research, decision-making, and…
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The National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS) and the U.S. Food and Drug Administration (FDA), Center for Drug Evaluation and Research (CDER) are hosting a jointly sponsored virtual workshop to explore Regulatory Fitness in Rare Disease Clinical Trials. The virtual workshop will take place over two days on May 16th – 17th. Academic investigators, patient…
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