New European Partnership launched in rare disease research
The European Rare Diseases Research Alliance (ERDERA) officially launched last week, marking a significant milestone in the fight against rare diseases. With a substantial budget of 380 million euros, ERDERA aims to enhance the lives of 30 million patients across Europe and beyond. This groundbreaking initiative, spearheaded by the European Union under Horizon Europe and led by France’s National Institute of Health and Medical Research (INSERM), brings together over 170 public and private organizations to advance research in rare diseases.
ERDERA will receive approximately 150 million euros from the European Union, with additional funding from member states, associated countries, and various public and private contributors. The new alliance will consolidate efforts previously undertaken by the European Joint Programme for Rare Diseases (EJP RD) and other EU-funded projects. Its mission includes boosting clinical research, innovating treatment options, and integrating data and resources to position Europe as a global leader in rare disease research.
ERDERA’s launch event is scheduled for 28 October 2024, where the partnership will unveil its strategic roadmap for the next decade. The event will include presentations from European Commission representatives, French health and research officials, ERDERA’s leadership team, and patient organizations. The alliance’s comprehensive approach will involve funding research projects, enhancing clinical networks, and aligning international research strategies to accelerate the development of new diagnostics and treatments for rare diseases.
ECRIN will be involved in developing training on multinational clinical trials management for rare diseases. The course's main objective will be solution-oriented training to address the most common barriers to planning, design and implementation of multinational clinical trials in Europe. The target audience for the course include principal investigators, sub-investigators, study coordinators and project managers who need training in the management of multinational trials.
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