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

13:00 Introduction
13:05 Understanding the important role of a multidisciplinary team in the MPS and AM patient journey: different specialty perspectives
13:15  The holistic approach in LSD patient management: addressing patients’ needs
13:20  Management of MPS and AM in daily practice – Patient follow-up and therapy effects evaluation
13:25  Exploring the ways to support MA Patient's Families
13:35  Q&A (via the Text on the EIP Webinar Hub)
13:45 End of Webinar

 

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!



This webinar is supported by Chiesi Farmaceutici S.p.A.
This information is intended for healthcare professionals only.
An attendance certificate is provided by EIP to all those attending a live webinar or watching a recorded webinar. Once all 4 webinars have taken place EIP will apply for CME credit/s connected to a combined Spot the Early Signs of AM Course - Further details will be available on the AM Resource Centre at: https://amd.spot-early-signs.org/