4 November 2026
The International Federation for Spina Bifida and Hydrocephalus (IFSBH) and the European Reference Network eUROGEN have published Sharing Urological Care & Management: Guidance from Families and People with Spina Bifida.
Developed with contributions from IFSBH’s national member associations, people with lived experience and multidisciplinary healthcare professionals, the guidance brings together clinical expertise and family experiences to explore the urological care journey from before birth through adulthood. It highlights the importance of timely information, regular monitoring, coordinated care and support that responds to changing needs throughout life.
Urological health is a key part of living with spina bifida. Bladder dysfunction can lead to complications affecting the urinary tract and kidneys, making early assessment, appropriate management and lifelong follow-up important. However, urological care involves more than medical interventions. It also concerns dignity, independence, informed decision-making and the ability to participate fully in everyday life.
Structured around six stages of life, the guidance addresses topics including bladder and bowel management, kidney health, family-centred care, self-management, transition from paediatric to adult services and access to appropriate support in adulthood. Experiences shared by people with spina bifida and families illustrate the realities of navigating healthcare systems and highlight the importance of accessible information, being heard and actively involved in decisions about care.
The guidance also brings together expertise from European healthcare networks and specialists. Contributions included input from clinicians from ERN eUROGEN and ERN ITHACA, members of the European Association of Urology (EAU)/European Society for Paediatric Urology (ESPU) Paediatric Urology Guidelines Panel, and the IFSBH Advisory Groups. The guidance is endorsed by ERN ITHACA, the European Association of Urology (EAU) and the European Society for Paediatric Urology (ESPU).
IFSBH warmly thanks all member associations, partners, people with lived experience and healthcare professionals who contributed to the development of this guidance. The publication reflects the value of sharing knowledge, experiences and expertise across the international SBH community and European healthcare networks.
