Better Understanding the Mucopolysaccharidosis (MPS) Patient and Family's Needs
Dr Christina Lampe (University Hospital of Giessen, Germany)
The Excellence in Pediatrics Spot The Early Signs program aims to fight under-diagnosed or late-diagnosed conditions for which treatments are available and where early detection and early treatment could make a significant difference in the condition's development, the quality of life and the survival of patients.
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 delaying actual diagnosis and treatment or referring the patient to the wrong pediatric specialties, causing further delays in the condition’s management chain.
To assist, EIP has launched the Spot the Early Signs Resource Centre to spread education in local medical communities and further develop and expand the trained on MPS frontline healthcare professionals network. The Resource Centre allows members to collaborate, engage and interact and where they can easily find information and education when needed - both for members and to share with colleagues. All recorded webinars are available to view without charge via the Resources Section of the site, along with further information on the Faculty, the Campaigns, the Upcoming Live New Webinars, and how you can Join Us to make your colleagues ‘think rare’ at every opportunity.
Dr Christina Lampe (University Hospital of Giessen, Germany)
Dr Hernan Amartino (Hospital Universitario Austral, Argentina)
Dr Carolina Fischinger (Hospital de Clinicas de Porto Alegre, Rio Grande del Sur, Brazil)
Excellence in Pediatrics
Excellence in Pediatrics
Join the Spot the Early Sign Program Network and help to mobilise the collective power of child healthcare professionals to ’think rare’ and look for the signs of rare diseases in every consultation.
As a member of the network, you can volunteer to be the main contact point in your clinic, hospital or institution and disseminate the Spot the Early Signs material and resources to your colleagues. You can also volunteer to deliver a Spot the Early Signs Webinar in a local language with all slides and material provided by EIP.
It’s free to sign up and have access to all the latest guidance, webinars and educational materials.
Alpha-mannosidosis: Minimising Delays in Diagnosis and Referral of PatientsThe symptoms, severity, and progression of AM vary widely between individuals, making diagnosis challenging and often delayed. Minimising the time to diagnosis is important in ensuring that individuals with AM and their families receive timely access to support and specialist MDT care.
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Metachromatic Leukodystrophy:
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Mucopolysaccharidosis: Understanding the path to successful diagnosis of MPS in childrenMisdiagnosis of MPS often leads to delayed diagnosis, as symptoms are commonly mistaken for other conditions. This frequently results in attempts to treat symptoms directly, thus postponing the actual diagnosis and treatment or referring the patient to incorrect pediatric specialties. Explore our MPS resource centre to discover 38 free webinars. These sessions are tailored to enhance your understanding of the disease and guide you through the referral and diagnosis process.
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