Networks

hlm

High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases

Events, Networks, News, Other

We are excited to announce the High-Level Meeting (HLM RARE) focused on strengthening the European research and innovation ecosystem for rare diseases. This important initiative will take place in Brussels from December 9-11, 2025. HLM RARE is led by the Brains for Brain Foundation (B4B) under the presidency of Prof. Maurizio Scarpa, working in close […]

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isimd 2025

ISIMD Annual Conference 2025

Events, Education, Education for Professionals, Networks

The Irish Society of Inherited Metabolic Disorders (ISIMD) Annual Conference will take place on Friday, 14th November 2025 in Dublin, Ireland. The ISIMD hybrid conference will focus on ‘New Insights and Personalised Treatments in Inborn Metabolic Disorders’ and is open to all health professionals with an interest in Inherited Metabolic Disorders. Online participation is also

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National workshops

upcoming national workshops on Cross-border Healthcare

Events, Networks, News for Patients

In 2024 and 2025 the European Commission has funded a series of national workshops to raise awareness on patients’ rights and obligations in cross-border healthcare, by improving information to patients and doctors. The workshops have been organised at national level by interested EU member states. Save the date and register for the two upcoming national

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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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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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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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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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