EIP Resources

Upcoming Webinars

The Excellence in Pediatrics Institute hosts expert-led webinars on rare paediatric conditions such as MLD, MPS III, CLN2, and Alpha-mannosidosis. Each series covers a broad spectrum of topics for the disease, including pathophysiology, early symptoms, disease progression, windows of intervention, management, patient support, transition to adult care, and the multidisciplinary approach. All webinars are free to attend live, and recordings are available on demand so participants can watch at their own pace afterwards, gaining access to expert-led discussions, case studies, and practical guidance for everyday clinical practice. Register for the Upcoming Webinars below

CLN-S1-M3

Sep 9, 2026 13:00

Multidisciplinary Management and Treatment in CLN2 (Batten Disease)

A 40-minute expert-led webinar on the multidisciplinary management of CLN2 disease, addressing treatment approaches, coordinated care pathways, and the role of early diagnosis in shaping long-term outcomes. Led by Dr. Dipak Ram, the session provides practical guidance for pediatric neurologists and general pediatricians on integrating treatment, supportive care, and multidisciplinary coordination to support children and families across the disease course.

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AMS4M1

Sep 16, 2026 13:00

The Child Who Keeps Coming Back: Recognizing Alpha-Mannosidosis Behind Recurrent ENT Infections, Hearing Loss, and Developmental Concerns

A 60-minute webinar that addresses the challenge of recognizing Alpha-Mannosidosis (AM) behind some of the most common presentations in pediatric practice – recurrent ENT infections, hearing loss, and developmental concerns. Led by Dr. Cláudia Falcão Reis and Prof. Mehmet Umut Akyol, the session helps clinicians connect symptoms that are often managed in isolation across specialties, recognize patterns that should raise suspicion for AM, and understand when to escalate to a metabolic referral.

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AMS4M2

Oct 7, 2026 13:00

Not All Alpha-Mannosidosis Look Severe: Recognizing Mild and Attenuated Forms in Everyday Pediatric Practice

This webinar addresses the challenge of recognizing Alpha-mannosidosis (AM) when it doesn’t look severe. Mild and attenuated presentations are commonly overlooked because they don’t appear severe enough to trigger suspicion of a rare disease. Led by Dr. Karolina Stepien, with a real-world case contributed by Dr. João Durães, the session uses a case example to illustrate the subtle signals that should prompt earlier escalation – even when the clinical picture doesn’t look severe.

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AMS4M3

Oct 28, 2026 13:00

What Matters Most? Monitoring Progression and Evaluating Treatment Impact in Alpha-Mannosidosis

This webinar addresses questions clinicians face now that disease-modifying treatment is available for AM: what should be assessed at diagnosis, and how should patients be monitored? Led by Agne Kerpauskiene and Dr. Mónica López Rodríguez, the session outlines a practical framework for baseline assessment and longitudinal monitoring using validated clinical scales, applied to a real treated AM case.

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Upcoming Webinars

Multidisciplinary Management and Treatment in CLN2 (Batten Disease)

The Child Who Keeps Coming Back: Recognizing Alpha-Mannosidosis Behind Recurrent ENT Infections, Hearing Loss, and Developmental Concerns

Not All Alpha-Mannosidosis Look Severe: Recognizing Mild and Attenuated Forms in Everyday Pediatric Practice

What Matters Most? Monitoring Progression and Evaluating Treatment Impact in Alpha-Mannosidosis

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