Welcome to Series 2 (2024) of the Spot the Early Signs of Alpha-mannosidosis (AM) Free-to-View Online Sessions
Illuminating the complexities of Alpha-mannosidosis (AM) - a path to eliminating the delays in diagnosis and treatment
All webinars in the series have been organised. You can still register to watch the videos of the recorded sessions.
Join us for our latest educational series designed to enhance the skills of healthcare professionals in identifying and managing Alpha-mannosidosis (AM). This series will share collective insights that aim to improve the lives of those affected by AM through better early diagnosis and transformative patient care. In Series 2, we will explore the signs, symptoms, and treatments of AM in-depth, incorporating new case studies that provide the latest clinical insights. Each session is crafted to expand on the knowledge gained in the previous series, offering a progressive and enriching learning experience that will boost your confidence and diagnostic abilities.
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Learning Objectives
- Reviewing the clinical case symptoms and differential diagnosis of the neuro-cognitive signs of AM
- Examining the differential diagnosis with other LSDs as well as non-LSD Rare Diseases and Conditions
- Reviewing the latest clinical studies and genetic diagnoses connected to cognitive impairment
- Exploring the characterisation of CNS pathology and correlation between CNS pathology and cognitive function in Alpha-mannosidosis
Learning Objectives
- The importance of the holistic approach to AM management
- Reviewing the care process and the specialists involved
- Understanding the multidisciplinary team in the MPS and AM patient journey: different speciality perspectives
- Exploring the patient management of alpha-mannosidosis
- Optimising therapeutic outcomes
Learning Objectives
- Analysing changes in mobility, pain or discomfort, and patients’ self-care over time (MLR)
- Practical insights from the survey on listening to patient voices and needs (MLR)
- Exploring the ways to support MA Patients and families (ST)
- Improving the support offered by HCPs - understanding what questions patients/families would like answered and what HCPs should ask (MLR & ST)
Learning Objectives
- Recapping the main signs of AM and exploring the key symptoms to look for
- Exploring how hearing impairment is present in 95% of AM cases
- Examining the latest data on hearing loss and AM
- Reviewing the diagnostic process and the differential diagnosis with other conditions
- Viewing hearing impairment as a key red flag for lysosomal storage disorders
The Alpha-mannosidosis Spot the Early Signs Educational Program is independently developed by the Excellence in Pediatrics Institute, which manages the content, topics, and speaker selection. To support its activities, EIP seeks unrestricted grants and sponsorships. Chiesi Farmaceutici SpA has sponsored these educational webinars.