Shine A Light On Alpha-mannosidosis (AM): Providing Personalized Care

60 minutes
English
Rare Diseases
Alpha-Mannosidosis
AM

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.

Learning Objectives

To understand the cause and heterogeneous symptoms of alpha-mannosidosisTo describe the aims and key outputs of the Delphi consensus study on practical recommendations for care in alpha-mannosidosisTo discuss the steps in establishing a diagnosis and early assessmentsTo explore approaches to personalized care through the lens of a real-life case study example