Excellence in Pediatrics is a non-profit
global network dedicated to advancing
pediatric healthcare.
Rue des Vignerons 18, 1110 Morges 1 (VD), Switzerland
A webinar series dedicated to shining a light on alpha-mannosidosis, an ultra-rare genetic disorder caused by deficiency of the lysosomal enzyme alpha-mannosidase. The symptoms, severity, and progression of alpha-mannosidosis vary between individuals, which presents challenges for both diagnosis and management. The first best-practice recommendations for monitoring and care coordination of individuals with alpha-mannosidosis were recently published. Join our expert panel as they explore how these recommendations translate into clinical practice, offering insights from their own experiences in diagnosing alpha-mannosidosis and delivering personalized, multidisciplinary care. The webinars feature case study examples, panel discussions, and audience Q&A.
To reflect on best-practice recommendations for practical care in alpha-mannosidosis through case studies and discussionTo review patient-reported outcomes and quality-of-life measures and consider how these can influence clinical practice and guide careTo consider how approaches to monitoring symptoms, clinical practice, and available resources may vary – and how barriers to care could be overcome