In this Webinar we are focusing on the importance of translational research referred to “bench-to-bedside” by showcasing two successful models for bridging the gap between preclinical and clinical research.
Paediatric Oncologist Professor Gilles Vassal from Institute Gustave Roussy, distinguished member of the ERNPaedCan, will present the ACCELERATE, an international multistakeholder organization to improve and accelerate new drug development for children and adolescent with cancer.
Joanne Lee from Newcastle University will talk about ACT concept (Advisory Committees for Therapeutics) and introduce the ACT toolkit. She will also provide background about the TACT Neuromuscular model and talk about [...]
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ERICA WP4 Clinical Trial Support webinar
Monday October 2nd
From 13:00 to 14:00 CEST
Speaker: Anton Ussi
This webinar will discuss challenges associated with getting ready for and conducting clinical trials in drug repurposing, with a focus on differences between trial requirements for future on-label or off-label use. The discussion will also highlight key services and tools available to the community, as well as the REMEDi4ALL projects support offering.
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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.
All the presentations are now available at the ERICA Website
PRESENTATIONS
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WP5 Translation and Innovation is organizing Innovation workshop focused on drug repurposing in rare diseases.
In the first part of the workshop, we will showcase success stories from two different ERNs as an inspiration for the community. Eduard J van Beers from ERN EuroBloodNet will give talk about mitapivat story and building relations with biomedical industry into investigator-initiated research programmes, and Nicola Specchio from ERN EpiCare will talk about drug repurposing in epilepsy.
In the second part of the workshop, expert Donald Lo from EATRIS (REMEDI4ALL project) will lead interactive session on [...]
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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.
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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 Newsletter Spring 2023 is out! read here…
Read about updated PROMs repository and Clinical Trial Support Survey and upcoming ERICA GA 6-7 July in Madrid.
If you want to keep informed about ERICA, please subscribe to our Newsletter.
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ERICA WP3Patient-Centred Research Patient Centered Expert Working Group (PCEWG) was held on the 31st of May between 3 pm and 6 pm (CET time).
The workshop’s objective was to present the updates on patient-centered work leads by WP3 During the workshop, WP3 presented the version 2.0 of the PROMs Repository, the approach to identify suitable PROMs for rare diseases with no specific PROMs (diseases functional impact clustering and concepts coding works) [...]
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ERICA WP4 Clinical Trial Support webinar
Wednesday May 24th
From 15:00 to 16:00 CEST
Speakers
Virginie Hivert, EURORDIS- Rare Diseases Europe María Cavaller Bellaubi, EURORDIS- Rare Diseases Europe
During the webinar ‘Framework for Patient Engagement in Clinical Trials’ they will talk about ‘what is patient engagement’ and its good practices and patient engagement in the ERNs’.
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