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

Events, Education, Education for Patients

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 […]

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Irish Society of Inherited Metabolic Disorders (ISIMD) – Annual Conference 2024

News, Events, Networks

The Irish Society of Inherited Metabolic Disorders hosts its annual conference at the Gresham Hotel Dublin with virtual participation available.

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MetabERN supports Rare Disease Day 2024

News, Events, News for Patients

The MetabERN patient community shares personal stories and experiences through video messages in support of the international Rare Disease Day 2024.

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EJP RD Final Conference / 27-28 May 2024

News, Events, Networks

The European Joint Programme on Rare Diseases concludes with a hybrid conference in Bari, bringing together experts to explore its lasting impact.

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Secondo incontro nazionale sulle malattie metaboliche

Second Italian National Meeting on Rare Inherited Metabolic Diseases in Adults

News, Education, Events, Networks

A national training event in Florence for young professionals focusing on diagnosis and management of Inherited Metabolic Diseases in adult patients.

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20th Annual WORLDSymposium – February 4-9, 2024

News, Events, Networks, News for Patients

The annual scientific meeting in San Diego brings together global experts in lysosomal diseases to share advances in research and clinical developments.

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Conference on Rare diseases and European reference networks in Bilbao

Education, Events, Networks, News

The Spanish EU Presidency conference in Bilbao addresses rare diseases and European Reference Networks while featuring an ALS-focused event.

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Swedish SLOS Conference – October 2, 2023

Events, News, News for Patients

A collaborative conference on Smith-Lemli-Opitz syndrome in Gothenburg brings together families and medical professionals with both onsite and online access.

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Brain Metabolism Workshop – 6-7 July 2023

Education, Education for Patients, Education for Professionals, Events, Networks, News, News for Patients

From 6 to 7 July 2023, the MetabERN centre Sant Joan de Déu Hospital in Barcelona will host the Workshop: “Brain Metabolism Workshop: from rare diseases to common biological pathways”. This will be an excellent occasion for patients, clinicians, and researchers for sharing knowledge and new ideas on brain metabolism as a transversal approach for

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“Genetic therapies” course in Heidelberg – 22-24 June

Education for Professionals, Events, News

Registration is now open for the “Genetic therapies” course promoted by Recordati Rare Disease Fondation d’Entreprise, which will be held in person from 22 to 24 June 2023, in Heidelberg (Germany). The course will provide valuable insights into the rapidly evolving field of genetic therapies and their application in rare diseases, mainly inherited metabolic diseases.

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Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs

Education for Patients, Education for Professionals, Events, News

We are delighted to announce the Cross ERN Workshop (MetabERN – ERN TransplantChild – ERN RARE-LIVER) which will be held in Coimbra, Portugal on 8 to 9 June 2023. The workshop is aimed at paediatric, adult physicians, patient associations and patient advocacy organizations from three European Reference Networks and is supported by the EJP RD Support scheme for Networking

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