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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ERICA Newsletter Summer 2024 is out! read hereโฆ
Read about ERNs Clinical Trials Repository pilot and Clinical Trial Support webinars and upcoming ERICA GA & ERN Research conference 11-13 December in Udine, Italy, including Call for Abstracts!
If you want to keep informed about ERICA, please subscribe to our Newsletter.
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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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The increasing recognition and diagnosis of rare diseases over the past decade have led to a growing body of knowledge within specialised clinical teams and centers. This expansion is evident in the European Reference Networks (ERN), which connect over 1,600 clinical teams from more than 300 specialised hospitals in the EU/EEA region.
The challenge now is to transform this collective expertise into real-world evidence that can enhance diagnosis, care, and treatment. The key lies in developing disease-specific outcome measures that reflect the effectiveness of care and treatment for each rare condition. These measures provide a common framework for experts to [...]
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It is well acknowledged that a different approach is needed to evaluate new Orphan Medicines compared to standard medicines and vaccines, due to the small population numbers that are impacted by rare diseases.
With limited published evidence available, how can we adopt an enhanced approach to reviewing all the available information on new rare disease medicines in order to support clinical decision making?
This webinar will bring together experts and methodologists experienced in successfully navigating the underlying issues. They will propose solutions for developing effective guidelines for the evaluation of evidence to support clinical decision making for people living with [...]
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