News for Patients

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Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time

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

Elevated ammonia levels in the blood may result from various inborn errors of metabolism and can cause neurological impairment or mortality. This represents a time-sensitive medical situation, and prompt testing, diagnosis and management are essential to prevent life threatening events. On September 18 at 17.00 CEST, MetabERN is hosting a webinar titled “Think Ammonia! Test […]

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Fabry Disease

Recognising Fabry Disease in Cardiology

Education, Education for Patients, Education for Professionals, News, News for Patients

As we wrap up Fabry Disease Awareness Month, the Antwerp University Hospital UZA, in collaboration with MetabERN, is excited to offer two free video lectures focused on recognizing Fabry disease in cardiology. These sessions are designed to empower cardiologists, general practitioners, internists, and specialists in metabolic diseases with the latest insights and knowledge from leading

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RND Reaserchers Forum

Rare Neurotransmitter Diseases (RND) Researchers Forum

News, Events, Networks, News for Patients

Join the Rare Neurotransmitter Diseases (RND) Researchers Forum which will take place on May 16, 2025, in Zagreb, Croatia, under the theme: “Connecting the Network: From Basic Research and Clinical Phenotypes to Patient Voice.” The aim of this event is to contribute to knowledge exchange on research advancements, diagnostic tools, and treatment modalities and provide

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Public consultation

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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Uniamo

#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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