What Every Paediatrician Needs To Know About The Alpha-mannosidosis (AM) Patient’S Journey

30 minutes
English
Rare Diseases
Alpha-Mannosidosis
AM

A webinar series dedicated to spotting the early signs of alpha-mannosidosis (AM), an ultra-rare genetic disorder caused by a deficiency of the lysosomal enzyme alpha-mannosidase. The symptoms, severity, and progression of alpha-mannosidosis vary widely between individuals, making diagnosis challenging and often delayed. Minimizing the time to diagnosis is important in ensuring that individuals with alpha-mannosidosis and their families receive timely access to support and specialist MDT care. Join our experts as they explore the diverse symptoms of alpha-mannosidosis, challenges, solutions for timely diagnosis, and best practices for long-term management and multidisciplinary care. The webinars will feature case study examples, practical advice, and audience Q&A.

Learning Objectives

Understanding the important role of a multidisciplinary team in the MPS and AM patient journey: different specialty perspectivesThe holistic approach in LSD patient management: addressing patients’ needsManagement of MPS and AM in daily practice – Patient follow-up and therapy effects evaluationExploring ways to support MA patient's families