The launch of ERDERA’s Networking Support Scheme โ a funding initiative designed to foster knowledge exchange on rare diseases and rare cancers across Europe. ๐
Launched on 30 May, the NSS helps promote knowledge sharing on rare diseases and rare cancers through the funding of events. It also encourages the participation from underrepresented European countries in networks.
๐ Applications will be open on a continuous basis โ collected every 6 months, starting 7 October 2025.
Learn all about it: https://erdera.org/nss/
Share this great opportunity with your networks!
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Attention ERN research community!
ERDERA& Together4RD webinar on Monday, 23 June at 17:00 CEST to mark the official launch of the Together4RD Toolkit โ a new strategic resource designed to support European Reference Networks (ERNs) in establishing more effective, transparent, and mutually beneficial collaborations with industry partners.
Co-created with ERN and industry stakeholders and grounded in real-world pilot experiences, the Toolkit directly addresses common challenges in rare disease research, such as legal uncertainties and misaligned expectations.
Far more than a collection of resources, the Toolkit serves as a practical guide to help ERNs and companies:
Accelerate diagnosis Improve clinical outcomes [...]
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Call for experts – Technical Advisory Group on Clinical Research Ecosystem Strengthening
Deadline: 24 June 2025
Rare disease clinical research experts!
The World Health Organization (WHO) is seeking experts to serve as members one of the Technical Advisory Group on Clinical Research Ecosystem Strengthening.
It is important that the Rare Disease expertise would be considered too. Please consider & share it within your ERN & Rare Disease Research network!
More info: Call for experts – Technical Advisory Group on Clinical Research Ecosystem Strengthening
Who can express interest?
The Technical Advisory Group on Clinical Research Ecosystem Strengthening will be multidisciplinary, [...]
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Industry brings resources and knowledge beyond funding, an articulation of the contribution of the private sectors in public-private partnerships in rare disease research
๐ Thursday 16 January | ๐ 5:00-5:45 pm CET
Together For Rare Diseases with ERICA are launching a series of webinars on how to work between industry and ERNs for partnering in research with joint projects.
Moderator: Sheela Upadhyaya, Chair, Together For Rare Diseases
Speakers:
Vinciane Pirard, Scientific Advocacy and Insights, Global Medical Affairs โ Rare Diseases,
Sanofi Luca Sangiorgi, Director, Rare Bone Disorders Department and Coordinator Rare Bone Diseases [...]
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The ERICA ERN Research Conference took place place from December 11th to December 13th, 2024 in Udine, Italy.
Hosted by MetabERN.
The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA Conference serves as a great opportunity to โmeet and greetโ the active ERN research community, to present the research projects involving ERNs and to discuss the future of [...]
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๐๐ฅ๐ก๐ ๐ฎ๐ฟ๐ฒ ๐ฎ ๐ธ๐ฒ๐ ๐๐จ ๐ถ๐ป๐ณ๐ฟ๐ฎ๐๐๐ฟ๐๐ฐ๐๐๐ฟ๐ฒ ๐๐ผ ๐ฝ๐ฎ๐ฟ๐๐ป๐ฒ๐ฟ ๐ณ๐ผ๐ฟ ๐ฟ๐ฒ๐๐ฒ๐ฎ๐ฟ๐ฐ๐ต ๐ฎ๐ฐ๐๐ถ๐๐ถ๐๐ถ๐ฒ๐, ๐๐ต๐ฒ ๐๐ต๐ ๐ฎ๐ป๐ฑ ๐๐ต๐ฒ ๐ต๐ผ๐
๐ Monday 2 December | ๐ 5:00-5:45 pm CET
Registration is closed
Together For Rare Diseases with ERICA are launching a series of webinars on how to work between industry and ERNs for partnering in research with joint projects.
First webinar will provide a comprehensive overview of ERNsโ core mission within the European healthcare landscape, detailing the resources, expertise, and infrastructure ERNs offer, and illustrating how collaborations between ERNs and the private sector can accelerate rare disease research and drug development, benefiting [...]
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Applications are now open for the 2025 edition of the Open Academy Schools, offering intensive, face-to-face training in Barcelona from 2-5 June 2025. This year, the Schools on Medicines Research & Development and Scientific Innovation & Translational Research will run in parallel, featuring expert-led sessions on patient engagement, leadership, and a research facility visit. A new online programme on data, ethics, and AI in rare disease research will also be launched, running from January to June 2025.
The Open Academy Schools enter a new era under the European Rare Diseases Research Alliance (ERDERA) partnership. The Schools [...]
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The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget of 380 million euros and the aim of improving the lives of 30 million rare disease patients in Europe and beyond.
To address these important issues, the European Rare Diseases Research Alliance (ERDERA) has been set up to build on the advancements made by former EU funded projects such as SOLVE-RD, ERICA and the European Joint Programme for Rare Diseases (EJP RD), the previous partnership which has run for the past 5 years.
To leave no one behind, over 170 organizations championed by the European [...]
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The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. Recently we have identified that some patients could not take part in a clinical trial because they do not speak the official language of the country where the trial is performed or English.
Enpr-EMA is currently collecting data from Clinical Research Units and, also from parents of children living [...]
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ACT-EU* – Accelerating Clinical Trials in the EU
Please contribute to ACT-EU survey
Target group: Academic Stakeholders
The aim of the survey is to identify needs and priorities of academic stakeholders involved in clinical trials, integrating them into the work of ACT EU. It seeks to address challenges in conducting clinical trials in the EU faced by ERNs and academics, highlight topics needing further clarification or discussion, and propose solutions for improving and accelerating clinical trials. Academic stakeholders are encouraged to contribute ideas for improvement across various aspects of clinical trial governance and implementation, clinical trial methodologies [...]
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