Survey on online training needs in the context of rare diseases research

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 & Read more about Survey on online training needs in the context of rare diseases research[…]

EU-OPENSCREEN-DRIVE open calls

EU-OPENSCREEN is launching its first open calls for research proposals. 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 countries and up to one user from a non-European country will have the opportunity to access 7 Read more about EU-OPENSCREEN-DRIVE open calls[…]

Rare As One Project

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 Read more about Rare As One Project[…]

New article on transparent evaluations of FAIRness

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 Read more about New article on transparent evaluations of FAIRness[…]

EURORDIS Black Pearl Awards 2020: call for nominations

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 Read more about EURORDIS Black Pearl Awards 2020: call for nominations[…]

European Research and Innovation Days

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 Read more about European Research and Innovation Days[…]

TO-REACH consortium draft Strategic Research Agenda open for consultation

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 Read more about TO-REACH consortium draft Strategic Research Agenda open for consultation[…]

EURORDIS position paper: Achieving Holistic Person-Centred Care to Leave No One Behind

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 Read more about EURORDIS position paper: Achieving Holistic Person-Centred Care to Leave No One Behind[…]

Horizon Impact Award

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 Read more about Horizon Impact Award[…]