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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ERICA Survey on ERNs Clinical Research

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This survey aims to collect information on the status quo on ERNs and Clinical Research.
It is developed by ERICA WP4 WP4 Clinical Trial Support on the basis of the previous survey delivered in 2018.
The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs and clinical research.

The survey is addressed both to ERN Coordinators and their ERN HCP members.

Please fill in the survey here: https://ec.europa.eu/eusurvey/runner/ERICAsurvey

The survey will be open [...]

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Launch of the Patient Engagement Resource Centre

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EATRIS and EPF, together with affiliated partner EATG launched the Patient Engagement Resource Centre (PERC), a platform designed to help researchers better engage patients in their research. The PERC was developed as part of the #Horizon2020 project, EATRIS-Plus.

The PERC is an easy to navigate platform that offers:

publicly available guidance and practical tools video stories FAQ

to support researchers to begin engaging patients in their research, and will ultimately enable researchers to engage with patients in a meaningful way.

The PERC is available now. View and use the platform here: https://patient-engagement.eu/

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MOOC 2: Diagnosing Rare Diseases: From The Clinic To Research And Back

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We are thrilled to announce a new session of the online course “diagnosing rare diseases: from the clinic to research and back”, which will be offered for free !

Participants will learn about diagnostic research progress, types of genetic tests for rare diseases, and the impact of having or lacking a diagnosis on patients’ lives over 5 weeks. They will also explore rare genetic disease issues and conduct an internet-based investigation on diagnostic research topics. The weekly content is 3 hours, and learners will receive cutting-edge insights.

Expert mentors will be readily available on the platform to address any questions [...]

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