ERN-EuroBloodNet Task Forces
ERN-EuroBloodNet major aim is to remove existing barriers to access best quality health care for rare hematological diseases RHD patients across all Europe by connecting the highest expertise available. European networking and the establishment of solid bridges of collaboration is even of major importance in case of very rare RHD given their lower prevalence, and in most of the occasions, the lack of available knowledge and scarcity of expertise.
In this scenario, 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 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.
Accordingly, ERN-EuroBloodNet has identified the need to create Task Forces on specific ongoing projects, which are formed by:
- Virtual Boards: health professionals from:
- ERN-EuroBloodNet members
- Affiliated Partners (APs)
- Supporting partners: European centers (not members nor APs)
- Patients Associations supporting group
Accordingly, the following Task Forces have been already defined for the implementation of specific actions, visit them to know the experts conforming the boards and their specific actions undergoing!