Enhancing Integration of European Reference Networks for Rare Diseases
This project aims to improve the integration of European Reference Networks (ERN) into healthcare systems across member states, focusing on governance, quality assurance, patient pathways, and data management. By supporting national networks, implementing interoperable data sources, and ensuring sus
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Patient Mobility and Cancer: Role of Joint Actions in European Cancer Care
Activities focusing on standardizing cancer care in Europe include quality assurance of screening programs, defining survivorship, establishing Comprehensive Cancer Control Networks, addressing socio-economic inequalities, and promoting public health genomics. The European Cancer Patient Coalition e
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EURORDIS Support to ePAG Advocates: Recruitment Strategy Meeting Overview May 2022
EURORDIS has shifted its focus to supporting ePAG advocates across various horizontal areas such as governance, research, and training. This includes the establishment of working groups like Training and Education, Research and Registries, and Compensation. The Recruitment Strategy for 2022-2023 inv
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ePAG Steering Committee Governance Update Summary
The ePAG Steering Committee is working on governance aspects and templates for ePAGs, focusing on patient engagement and transparency. The committee aims to establish clear requirements for patient organizations, formalize relationships between ERNs and patient organizations, and integrate rules for
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