European Reference Networks (ERNs) major aim is to remove existing barriers to access best quality health care for rare diseases patients across all Europe by connecting the highest expertise available on Rare Hematological Diseases (RHD). 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:
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:
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!