Yesterday 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 […]
Read More
The European Commission (EC) is inviting interested stakeholders to participate in the open consultation of the Strategic Research and Innovation […]
Read More
The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 2021 edition of the Duchenne Patient […]
Read More
Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing […]
Read More
All ERNs are tasked to set up patient registries that follow the FAIR Principles, as these ‘FAIR registries’ are essential […]
Read More
[PRESS RELEASE] The Critical Path Institute (C-Path), an independent nonprofit organisation, and Pulse Infoframe, a real-world evidence generation, health informatics […]
Read More
The European Medicines Agency (EMA) is organising a webinar for small and medium enterprises (SMEs) and academia on the Clinical […]
Read More
EJP RD is co-organising the “Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward” conference in cooperation with Alexion, EURORDIS, EUCOPE, […]
Read More
The European Health Data & Evidence Network (EHDEN) Consortium and the European Patients’ Forum (EPF) have jointly developed a free […]
Read More
The EHDEN Consortium announces its 5th Open call targeted towards data custodians of Electronic Health Records, Claims, Hospital and Registry data across Europe, supporting the mapping of […]
Read More