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
Rare Neurotransmitter Diseases (RND) Researchers Forum Read More »
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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An exciting two-day hybrid course hosted by Sant Joan de Déu Hospital in Barcelona will take place on July 3rd and 4th, 2025. This course consists of eight immersive modules covering key aspects of neurometabolic emergencies and their differential diagnoses. Participants will delve into crucial topics such as acute metabolic decompensations, neuroimaging patterns, emergency interventions,
Emergencies in Neurometabolic Disorders and possible differential diagnosis Read More »
The 22nd Postgraduate Course on Lysosomal Storage Disorders is set to take place from June 11 to 14, 2025 in Nierstein, Germany. This course organised by the Department of Paediatric and Adolescent Medicine at the University Medical Center Mainz is renowned for its dedication to enhancing the understanding of lysosomal storage disorders (LSDs) among professionals
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The conference entitled Towards an EU Action Plan on Rare Diseases will take place on 10 April 2025 at 9 a.m. at the Medical University in Warsaw, Poland, hosted by the European Economic and Social Committee (EESC), the Polish Ministry of Health, and the Medical University of Warsaw. The conference will take place under the auspices of
‘Towards an EU action plan on rare diseases’ Conference Read More »
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
Tyrosinemia Type 1 – webinar hosted by the AOA Subnetwork Read More »
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
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
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
European Parliament Consultation on Rare Diseases Read More »
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
Dialogue Between Physics and Metabolism in Brain Functions Read More »
Recordati Rare Disease Foundation is hosting a course on liver & liver-kidney transplantation for inherited metabolic disorders in London form 12 to 14 June 2025. Liver transplantation, either alone or combined with kidney transplantation, has become an established therapy options for some inherited metabolic diseases. There are now more reports with long-term follow-ups for several
Register for the Online Webinar “Think Ammonia” hosted by the Greek patient organisation Krikos Zois in collaboration with Metabolic Support UK and endorsed by MetabERN. Go to the registration page. Ammonia is a metabolite that is present in all living organisms. However, its potential danger as a silent predator is less well-known. We are pleased
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The SanFilippo Fighters Patient Organisation and the European Reference Network for Inherited Metabolic Diseases (MetabERN) invite you to the first session of an exciting webinar series exploring various aspects of SanFilippo Syndrome. This webinar offers a unique opportunity to learn from the following leading experts in the field: Dr. Serena GasperiniIRCCS San Gerardo dei Tintori
SanFilippo Webinar – Urgencies & Pain Management Read More »
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