European Parliament Consultation on Rare Diseases

News, Networks, News for Patients, Other

On 28 February 2025, the newly established Committee on Public Health (SANT) of the European Parliament launched an important public consultation focused on rare diseases. The objective of this consultation is to inform the Committee’s upcoming initiatives by enhancing understanding and knowledge of the challenges encountered by individuals affected by rare diseases. Additionally, it seeks […]

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#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle

News for Patients, Events, Networks, News, Past Event

On February 11, the Parliament Hall of Udine Castle hosted an event for Rare Diseases Day, organized by UNIAMO Federazione Italiana Malattie Rare in collaboration with the Udine University Hospital (Azienda Sanitaria Friuli Centrale-ASU FC) and MetabERN. This initiative was part of the #UNIAMOleforze campaign, featuring over 60 events throughout February to raise awareness of

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ERICA ERN Research Conference hosted by MetabERN

News, Events, Networks

The ERICA ERN Research Conference (11th to 13th December 2024) concluded in Udine a few days ago. Over three days, more than 178 participants from all the 24 European Reference Networks, along with representatives from the European Commission, pharmaceutical companies, and regulatory agencies, gathered to discuss topics which will be crucial for the future of

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MetabERN Board Meeting 2024: updates from Budapest

Events, Networks, News, Uncategorized

MetabERN recently hosted its annual three-day board meeting in Budapest. This successful event brought together approximately 100 participants.

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Highlights from Our Impactful Month of Collaborations and Meetings

News, Events, Networks

The last couple of months were an eventful and enriching time for our team as we participated in three significant meetings that brought together professionals dedicated to improving care for patients with inherited metabolic disorders (IMDs). Each meeting provided a unique opportunity to engage with experts and patient representatives, share knowledge, and discuss critical topics

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Join the 2025 ERNDIM-EQA Schemes: Registration Now Open

News, Networks

Healthcare professionals are invited to register for the 2025 ERNDIM External Quality Assurance schemes to ensure high standards in metabolic diagnostics.

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DeCODe Project Kick-Off: supporting Paediatric and Orphan Device Development

News, Networks, Press Releases

The DECODE Project aims to improve the diagnosis of inherited metabolic disorders through collaborative research and innovative methodologies.

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International Neonatal Screening Day (INSD) / 28 JUNE

News, Events, Networks

Celebrating advancements in neonatal screening on International Neonatal Screening Day 2024, emphasizing early detection of metabolic disorders.

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ERICA 4th General Assembly & ERN Research Conference

News, Events, Networks, Other

MetabERN contributes to the ERICA General Assembly, collaborating with European Reference Networks to enhance rare disease research.

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Job opening: Medical Writer / Research Facilitator

News, Networks, Other

The Regional Coordinating Centre for Rare Diseases of ASU FC seeks a Medical Writer to support MetabERN’s research promotion activities in Italy.

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Patient Journey on PDH Deficiency

News, Education, Networks, News for Patients

A comprehensive guide for PDH Deficiency patients covering symptoms, diagnosis, treatment and life transitions, available in multiple European languages.

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