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 2

Illuminating the patient voice

LEARNING OBJECTIVES

• To reflect on best-practice recommendations for practical care in alpha-mannosidosis through case studies and discussion
• To review patient-reported outcomes and quality-of-life measures and consider how these can influence clinical practice and guide care
• To consider how approaches to monitoring symptoms, clinical practice, and available resources may vary – and how barriers to care could be overcome

PRESENTERS

• Dr Nathalie Guffon, Femme Mère Enfant Hospital, France
• Dr Can Ficicioglu, The Children’s Hospital of Philadelphia, USA
• Dr Christina Lampe, University Hospital of Giessen, Germany

SESSION AGENDA

• Welcome and introduction (5 mins - Dr Nathalie Guffon)
• Personalized care in alpha-mannosidosis (25 mins - Dr Can Ficicioglu)
• Illuminating the patient voice: Patient-reported outcomes and quality-of-life in alpha-mannosidosis (15 mins - Dr Christina Lampe)
• Audience Q&A (15 mins - All)

Take a quick look at the infographics

Watch the video!