Presentations ERICA & EJP RD Joint Conference 21.11.2023

Presentations ERICA & EJP RD Joint Conference

That took place 21st November, 2023 in Amsterdam as a face-to-face meeting.

Groepsfoto-Endocrinologie- november 2023 -4-k

Morning Session

Welcome and introduction Alberto Pereira(ERICA), Daria Julkowska (EJP RD) and Hélène Le Borgne (European Commission):

Examples of Synergies between both projects (ERICA & EJP RD)

Input to Virtual Platform and its functionalities Franz Schäfer, Ana Rath and ERN example:

Biobanking and Clinical Trials Eduardo L. Granados and Luca Sangiorgi:

ERN Clinical Trials Survey(s) Rima Nabbout, Luca Sangiorgi and Dieter Hilgers:

Developed tools for RD researchers (IMT, webinars) Adriana Planinic and Bonka Georgieva:

Communication & Dissemination Mari Murel and Yanis Mimouni:

Collaboration of ERNs and non-ERNs researchers

IHI Call for Clinical Research Magda Chlebus (online) and Dieter Hilgers

JARDIN-Data Sharing & Integration Holm Graessner

Together4RD: position statement on collaboration between ERNs and industry Mathieu Boudes and Rima Nabbout:

International Collaboration – NIH and RD network Tiina Urv (NIH):

International Collaboration – Canadian and RD network Breanne Stewart (MICYRN):

Afternoon Session

Preparing the path to the European Rare Diseases Research Alliance (ERDERA)

General introduction Daria Julkowska and Yanis Mimouni:

Updates & Special WP25 Task for ERNs Maurizio Scarpa, Luca Sangiorgi and Alexis Arzimanoglou:

Accomplished tasks to be transferred to ERDERA Moderated by Franz Schäfer:

Data Hub Ronald Cornet:

ERN Repositories (PROMs/CTs) Ana Rath:

Overview of use cases Franz Schäfer and Mar Mañu Pereira:

Discussions Q&A: