ERN-EuroBloodNet Diseases on Focus
ERN-EuroBloodNet Diseases on Focus
ERN-EuroBloodNet has established a strategic action based on a multi-action approach that is implemented for the RHD groups with a higher need of pooling and sharing of information. This multi-action approach namely targets:
- Actions to open-up the existing knowledge of the management of these diseases through
- Devoted educational online and onsite activities Webinars Programs for health professionals, Webinars Programs for patients and patients associations and Preceptorships
- Compilation of RHD Guidelines and other supporting decision-making tools in a public queryable central repository including their classification on Quality Domains
- Actions to make expertise searchable for the provision of advice supporting the clinical management of complex cases through the Clinical Patient Management System
Currently, ERNs systems do not cover the whole EU and EEA area, and therefore devoted efforts have been focused on the integration of Affiliated Partners (APs). APs are not members of the Networks but are designed to establish links with ERNs to contribute to the Networks' activities and benefit from their expertise, facilitating the sharing of knowledge across the EU.
However, the highly specialized expertise on very rare disorders may still be available in other European centers that are not part of the official ERNs Board of Members or APs and which participation represents a high added value on these precise actions. This group of experts are named Supporting Partners (SPs).
Accordingly, ERN-EuroBloodNet has identified the need to create dedicated sections focused on specific diseases, which are formed by:
- Health professionals from:
- Patients Organizations supporting group (POs)
Accordingly, the first Disease on Focus section has been already defined for the implementation of specific actions, visit it to know the experts conforming the board and their specific actions undergoing!
More Diseases on Focus Sections will be published soon!!