Education for Patients

MPS News

18th International MPS 2026 Symposium & MPS MasterClass

The 18th International Symposium on Mucopolysaccharidoses and Related Lysosomal Diseases will take place on June 4-7, 2026, in Florence, Italy at Palazzo Affari and Palazzo dei Congressi. This global event will reflect on the last 20 years of progress made in Mucopolysaccharidoses (MPSs) and set sights on the next 20 years of innovation, advocacy, and collaboration. […]

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Menkes Disease Webinar

Upcoming Webinar – Early Diagnosis of Menkes Disease

The upcoming PTEP webinar titled “Early Diagnosis of Menkes Disease” is scheduled for May 7 at 17:00 CEST. This webinar, hosted by MetabERN in collaboration with Menkes International Association, aims to provide a comprehensive overview of the critical importance of early diagnosis in Menkes Disease. This rare and severe metabolic disorder affects copper transport in the

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YPA Webinar 1

Webinar: Young Patient Advocacy – A Call to Action for Transition!

MetabERN in collaboration with the Greek patient organization, Krikos Zois, will be hosting a webinar on Young Patient Advocacy and Transition on 19 March at 17:00 Central European Time (CET). This session as part of the Patient Therapeutic Education Programme (PTEP) is designed for patients, patient representatives and healthcare professionals involved in the study and care of

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Mariani Workshop

Online Workshop: The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family

The Mariani Foundation Centre for Hereditary Metabolic Diseases of Childhood in Monza (Italy) is organizing the workshop “The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family” which will be held online on 8 April and on 15 April 2024. The Workshop aims: The Workshop will be conducted in Italian and receive accreditation for

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