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 3

A brighter future

LEARNING OBJECTIVES

• To consider approaches to monitoring treatment-related outcomes, including enzyme replacement therapy, hematopoietic stem cell transplant, and supportive care, and how timely access to treatment may improve patient outcomes
• To demonstrate the need for a multidisciplinary approach to care and how this may be tailored to the individual
• To discuss challenges and hopes for the future of care in alpha-mannosidosis

PRESENTERS

• Dr Christina Lampe, University Hospital of Giessen, Germany
• Dr Barbara Burton, Ann & Robert H. Lurie Children's Hospital of Chicago, USA
• Dr Karolina Stepien, Salford Royal NHS Foundation Trust, UK

SESSION AGENDA

• Welcome and introduction (5 mins - Dr Nathalie Guffon)
• Optimizing treatment-related  follow-up care (15 mins - Dr Barbara Burton)
• A multidisciplinary approach to care (15 mins - Dr Karolina Stepien)
• The future of care in alpha-mannosidosis: panel discussion (5 min - All)
• Audience Q&A (20 mins - All)

Take a quick look at the infographics

Watch the video!