Patients Active in Research and Dialogues for an Improved Generation of Medicines WP1 – Defining stakeholders’ preferences, needs and expectations This report describes the work that was done as part of PARADIGM’s work package 1 (WP1), which aimed to identify and define stakeholders’ preferences, needs and expectations in patient engagement (PE) through an online survey…
EJP-RD is a multifaceted program aimed at supporting Rare Disease (RD) research in every possible way. This include funding of primary research, networking and training capacities as well as the development and application of tools and methodologies facilitating the generation, analysis, and dissemination of data all the way from genetic/translational research to clinical trials. Dr. Roseline Favresse &…
EU-OPENSCREEN is launching its first open calls for research proposals. The calls were both extended until September 30th, 2019 20:00 CET. Hurry up, don’t miss the chance. Two Transnational Access Calls are currently opened: Chemoproteomics Call promotes collaborative research on target identification and compound disposition studies. Users from institutions within European member states and associated…
The Chan Zuckerberg Initiative (CZI) is launching the Rare As One Project to lift up the work that patient communities are doing to accelerate research and drive progress against rare diseases, which affect 400 million people worldwide. As part of the project, CZI is inviting patient-led 501(c)(3) organizations to apply for a new two-year grant opportunity…
The newly published article on transparent evaluations of FAIRness that is increasingly required by a wide range of stakeholders, from scientists to publishers, funding agencies and policy makers, “Evaluating FAIR maturity through a scalable, automated, community-governed framework”, shed a light on a scalable, automatable framework to evaluate digital resources that encompasses measurable indicators, open source…
The EURORDIS Black Pearl Awards is an annual awards ceremony organised by EURORDIS-Rare Diseases Europe to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community. Nominations for the EURORDIS Black Pearl Awards 2020 are open…
European Research and Innovation Days is the first annual policy event of the European Commission, bringing together stakeholders to debate and shape the future research and innovation landscape. Speakers will include ministers, commissioners, members of European Parliament, researchers, as well as surprise guests each day. The event will be central to finding research and innovation…
The draft Strategic Research Agenda (SRA) developed by the EU funded TO-REACH Consortium is now available for consultation. The SRA has the ambition to address the increasing challenges faced by health systems, directed to those research areas of major relevance in the coming years. In particular, the TO-REACH Strategic Research Agenda provides a European strategy…
On 17th May, EURORDIS launched a Position Paper on ‘Achieving Holistic Person-Centred Care to Leave No One Behind’, at the EURORDIS Membership Meeting in Bucharest. In this position paper EURORDIS put forward their ambition to have holistic care provided to the 30 million people living with a rare disease in Europe, and their families, by…
The European Commission has launched the first Horizon Impact Award. This award recognise and celebrate outstanding projects that have used their results to provide value for society. The award aims to show the wider socio-economic benefits of EU investment in research and innovation. The award enables individuals or teams to showcase their best practices and…