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European Partnership Opens a New Era in Rare Disease Research

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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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PLEASE CONTRIBUTE: Cross-Border Access to Paediatric Clinical Trials Survey

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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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ERN input to ACT-EU priorities- Survey!

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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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Presentations ERICA & EJP RD Joint Conference available!

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The European Rare Disease Research Coordination and Support Action- ERICA and European Joint Programme of Rare Diseases (EJP RD)

Joint Conference took place 21st November 2023 in Amsterdam University Medical Centre.

Main topics:

Examples of Synergies between both projects (ERICA & EJP RD) Collaboration of ERNs and non-ERNs researchers Preparing the path to the European Rare Diseases Research Alliance (ERDERA)

View the full programme (, 172 KB).

Overview of all Presentations ERICA & EJP RD Joint Conference.

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3 ERN workshops opened for registration

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📣 Calling all researchers, clinicians, and healthcare specialists interested in cutting-edge advancements! The registration for three upcoming ERN workshops is now open:

1️ : “Advances in Regenerative Medicine and Tissue Engineering for Rare Musculo-Skeletal Diseases”: Discover the latest breakthroughs in regenerative medicine and tissue engineering specifically tailored for rare musculo-skeletal diseases. Join us for this incredible opportunity to learn from renowned experts in the field.
🔗 Learn more and register here.

🚨Deadline: 01 July 2023

2️ : “CDH1 Related Hereditary Diffuse Type Gastric Cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillance”. Calling all experts interested [...]

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