Read about last ERICA GA in Madrid, upcoming ERICA&EJP RD Joint Conference and new ERNs Clinical Trials Repository
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The European Rare Disease Research Coordination and Support Action- ERICA 3rd General Assembly took place 6-7 July 2023 in Madrid
We had two productive days full of interactive sessions and we are thankful for everyone’s active contributions both in Madrid and remotely.
27th June 2023 ERICA to support ERNs and other concerned paediatric organisations presented an open letter to EU Commissioner Kyriakides requesting urgent action to secure essential medical devices for patients of orphan disease. 5 simple actions are requested to preserve availability of vital medical devices for orphan diseases.
📣 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 [...]
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 [...]
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/
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 [...]
🚀Ready to make a difference in #RareDisease research? Join the new session of our MOOC “From Lab to Clinic: Translational Research for Rare Diseases” launching today. Join us to learn about the fascinating journey of translating research into treatments for rare diseases.
Gain insights from patients and experts, understand trial planning, design, and data sharing. With expert guidance, you’ll have a comprehensive understanding of how evidence is built for safe and effective treatments. Join now and make a difference in rare disease research!