Welcome to the Chiesi-sponsored live educational webinar series

Shine a light on alpha-mannosidosis

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.      

SESSION 1

Providing personalized care

LEARNING OBJECTIVES

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

PRESENTERS

• Dr Nathalie Guffon, Femme Mère Enfant Hospital, France
• Dr Mónica López Rodríguez, Hospital Universitario Ramón y Cajal, Spain
• Dr Martin Magner, Charles University and the General University Hospital, Czechia
  

SESSION AGENDA

• Welcome and introduction (5 mins - Dr Nathalie Guffon)
• The global alpha-mannosidosis Delphi consensus study: rationale and objectives (5 mins - Dr Nathalie Guffon)
• Spotting the signs and timely diagnosis of alpha-mannosidosis (20 mins - Dr Martin Magner)
• Personalized care in alpha-mannosidosis (15 mins - Dr Mónica López Rodríguez) 
• Audience Q&A (15 mins - All) 

Take a quick look at the infographics

Watch the video!