4 New Live Webinars

  
 

Spot the Early Signs of Mucopolysaccharidosis (MPS) in children

  
 
Taking Place: October/November 2021 
Dates and Speakers will be announced soon
 
     
  Misdiagnosis of Mucopolysaccharidosis (MPS) results in late diagnosis and the late start of treatment, which has significant consequences on long-term outcomes. This gap usually results in confusing symptoms with other conditions, most notably trying to address symptoms directly and therefore delaying actual diagnosis and treatment, or referring the patient to the wrong pediatric specialties causing further delays in the condition’s management chain. The 4 Webinars in Series 4 of the ongoing Spot the Early Signs of MPS Project builds on the previous 12 webinars, all of which can be accessed as free-to-view on-demand recordings via our MPS Resource Centre. Our target is to educate general pediatricians, pediatric rheumatologists, pediatric endocrinologists, ENT specialists and orthopedists (as specialists who often see patients with joint problems) about the signs of MPS through practical case studies, but also to arm them with the skills, knowledge and material to spread the message to their colleagues both in-person and online.  
     
         
         
         
     
 

4 New Live Webinars

  
 

Spot the Early Signs of Metachromatic Leukodystrophy (MLD) in children

  
 
Taking Place: December 2021/January 2022 
Dates and Speakers will be announced soon
 
     
  Metachromatic Leukodystrophy (MLD) is a rare hereditary disease characterized by the accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system, ultimately affecting intellectual and motor function. Early-onset clinical manifestations are often overlooked or confused with other conditions causing confusion amongst untrained HCPs at the first initial contact, resulting in misdiagnosis, wrong referral routes and delays in the early start of treatment. Delays at the start of treatment have significant consequences on the conditions’ development, and the patient’s health and quality of life. This delay in referral and treatment must be overcome. The 4 webinars in the Series will cover the basics of MLD, practical neurological case studies that offer the opportunity to connect the theory with the practice and treatment options. All webinars are free to attend and a certificate of attendance will be provided by the EIP Institute for those who attend online or watch the video of a session after a webinar is organised.