Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.
Watch our walkthrough videos in English and French for guidance navigating the calendar HERE.
This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder, a prevalent complication in SB, often leads to incontinence, hydronephrosis, and urinary tract infections, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the risk of renal failure, yet continence remains a persistent issue. Drawing on literature on PROMs and urological outcomes, we examine general health and bladder-specific outcomes, including tools to examine these. Factors influencing QoL include clean intermittent catheterization, transition readiness, mental health, and social support. Despite multimodal interventions, incontinence continues to impact daily life. The session highlights the importance of PROMs and multidisciplinary approaches to optimize care and improve long-term outcomes for SB patients.
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