MANAGEMENT AND CARE EUROPEAN REFERENCE NETWORKS Within the European Reference Networks (ERNs), IF is the patient representative organisation for persons with SBH. ERNs are networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. IF is an active partner in the ERN-ITHACA. The ERN-ITHACA is the European Reference Network for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders. IF is represented in the specific ERN-ITHACA working group spina bifida as well as in the Patient Advocacy Groups (ePAG). IF’s role as member of the ePAG is to represent the voice and interests of the SBH community and act as the linking pin between the SBH community and the ERN. During 2021 our regular meetings for the ERN-ITHACA working group spina bifida focussed on strengthening visibility of IF member associations and service providers with opportunities for mutual learning exchanges. In addition, IF facilitated the co-production of guidelines on urological management for children and adults with spina bifida in cooperation with ERN eUROGEN (the ERN for rare urogenital diseases and complex conditions in both children and adults).
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