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Rare disease, chronic pain and mental health: a patient’s story

News for Patients, Education for Patients, Events, News

What happens when your body is under siege, but the world can’t see the battle?Living with Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like episodes (MELAS) syndrome means navigating a rare, often invisible disease that reshapes every aspect of life. This Global Mental Health Day (October 10), we’re honored to share a patient’s story in a […]

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Mito

Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights

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

September shines a light on Mitochondrial Disease Awareness and Pain Awareness Month. Mitochondrial diseases impact around 1 in 5,000 individuals and often remain underdiagnosed and misunderstood. In recognition of Mitochondrial Disease Awareness Week (September 15–21) and Pain Awareness Month, we celebrate resilience by sharing an inspiring patient story alongside an expert-led presentation focused on chronic

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UDNI

14th International Network for Undiagnosed Diseases (UDNI) Conference

Events, Education for Professionals, Networks, News

The 14th International Network for Undiagnosed Diseases (UDNI) Conference will take place from 28 to 31 October 2025 in Rio de Janeiro, Brazil. The International Network for Undiagnosed Diseases (UDNI) was established in 2014 as a collaborative initiative spanning multiple countries. Its primary mission is to improve diagnostic rates for individuals living with undiagnosed conditions.

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Brain Dialogues Energy Metabolism

Brain Energy Metabolism Dialogue

Events, Education, Education for Professionals, News

The “Brain Metabolism Dialogues” webinar series is back! The upcoming webinar on Brain Energy Metabolism will take place on Monday 30 June at 17.00 CEST. Dr Luis Felipe Barros Olmedo from Universidad San Sebastian Valdivia, Chile will be the main speaker in our upcoming session. Following his presentation, an engaging panel discussion will ensue, designed to foster

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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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IDR25

International Drug Repurposing Conference – iDR25

Events, Networks, News

Join the iDR25 – Medicines Reimagined conference, organised by REMEDi4ALL, and Beacon, which will be held on 7 – 8 May 2025 in Amsterdam, The Netherlands. This exciting event will focus on unlocking the potential of existing drugs for patient benefit. It offers a unique opportunity to engage with global experts, key opinion leaders, and professionals who are at the forefront of drug repurposing

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Tyrosinemia type 1 graph

Tyrosinemia Type 1 – webinar hosted by the AOA Subnetwork

Education, Education for Professionals, Events, News

The MetabERN Amino and Organic Acids (AOA) Subnetwork is organising a webinar on Tyrosinemia Type 1, viewed from a neurometabolic perspective, on May 27, 2025, from 13:00 to 15:30 CEST. The webinar will be hosted by the Frambu Centre for Rare Diseases. The session will begin with Prof. Anibh Das providing an overview of Tyrosinemia

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EU

Building a Research and Innovation Ecosystem for Rare Diseases

News, Events, Networks, Other, Press Releases

The Brains4Brain foundation recently announced an important initiative dedicated to tackling a major challenge in healthcare: creating a comprehensive ecosystem for rare diseases. To launch this initiative, the foundation is hosting a preparatory event designed to present its project to policymakers, including Members of the European Parliament (MEPs), European Commission representatives, and officials from Member

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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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Dialogues on Physic regulation of Neurometabolism v.2 edited

Dialogue Between Physics and Metabolism in Brain Functions

Education, Education for Professionals, Events, News

The second webinar of our series “Brain Metabolism Dialogues” is taking place on Monday 24 March at 17.00 CET. Prof. Fanny Mochel from the Pitié-Salpêtrière Hospital in Paris will be the speaker of the webinar titled “Dialogue Between Physics and Metabolism in Brain Functions”. Molecular biology has transformed cellular biology, identifying genes linked to neurological

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