Welcome to the New Series of Excellence in Pediatrics Webinars
on Spotting the Signs of Metachromatic Leukodystrophy (MLD) in children
We are pleased to announce a dedicated series of webinars to enhance awareness and understanding of Metachromatic Leukodystrophy (MLD), a rare hereditary disease characterized by the accumulation of fats called sulfatides. Early-onset clinical manifestations are often overlooked or confused with other conditions, leading to confusion among non-trained healthcare professionals at first contact. This can result in misdiagnosis, incorrect referral routes, and significant delays in initiating treatment. Such delays can profoundly impact the condition's progression, as well as the patient’s health and quality of life.
Designed for an international audience of General Pediatricians, General Practitioners, Pediatric Neurologists, and other healthcare professionals interested in metabolic diseases, these webinars will empower you to better recognize the signs of MLD, navigate the diagnostic journey, and explore current and upcoming treatment options. Join us to strengthen your skills and contribute to improved outcomes for children affected by MLD. Register today to be part of this essential conversation!
Register to attend live or watch the video after each session is organised. It's free.
Wednesday, 22 January 2025
at 13:00 Central European Time (60 minutes)
Register for Webinar 2
LANGUAGE AND DURATION
Language: English
Duration: 60 minutes, including questions from the audience
LEARNING OBJECTIVES
- Exploring the diagnostic journey
- Considering how the path to diagnosis could be improved
- Understanding the importance of an early diagnosis.
PRESENTERS
- Prof. Paul Gissen, Clinical Professor and Honorary Consultant in Paediatric Metabolic Diseases, Genetics & Genomic Medicine Dept, Great Ormond Street Hospital (UK)
- Dr Anna Ardissone, Child Neurologist, Child Neurology Unit, Carlo Besta Neurological Institute, Milan, Italy
Wednesday, 29 January 2025
at 13:00 Central European Time (60 minutes)
Register for Webinar 3
LANGUAGE AND DURATION
Language: English
Duration: 60 minutes, including questions from the audience
LEARNING OBJECTIVES
- Exploring the Signs and latest treatments for MLD and other LSDs
- Understanding best practices
- Exploring the multidisciplinary care team approach to treatments
PRESENTERS
- Dr Dipak Ram, Consultant Paediatric Neurologist, Royal Manchester Children’s Hospital, United Kingdom
- Dr Mireia del Toro, Paediatrician, Specialist in Pediatric Neurology and Coordinator of the Metabolic Unit, Hospital Universitario Vall d'Hebron, Spain
This session has been organised on Wednesday, 13 November 2024
Register to access the video
Register for Webinar 1
LANGUAGE AND DURATION
Language: English
Duration: 60 minutes, including questions from the audience
LEARNING OBJECTIVES
- Successfully identifying MLD symptoms
- Practical Case Studies with the main presenting signs
- An in-depth look at typical presenting features
PRESENTERS
- Dr Francesca Fumagalli, Neurologist, Pediatric Immunohematology Unit and Department of Neurology, San Raffaele Hospital, Milan (Italy)
- Dr Alejandra Darling, Paediatric Neurologist, San Juan De Deu Hospital (SJDH), Barcelona, Spain
The MLD Resource Centre is independently developed and managed by EiP regarding content, topics and speakers appointed. Unrestricted grants are sought to support EIP activities, and Orchard Therapeutics has provided an unrestricted grant to partially support EIP's work on the misdiagnosis of metabolic disorders.
