COURSE DESCRIPTION

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. Minimising 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 and 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.

Language: English 

Duration: 30 minutes, followed by 15 minutes of questions from the audience and discussion

Presenter: Dr Christina Lampe,  Director of the Centre for Rare Diseases of the Department of Child Neurology, Epileptology and Social Medicine, Center for Paediatric and Adolescent Medicine at the University Hospital of Giessen, Germany

SESSION STRUCTURE

LEARNING OBJECTIVES

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

Watch the video!