WP5 Innovation workshop on drug repurposing in rare diseases


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 [...]


3 ERN workshops opened for registration

ERN Workshops 23 smaller

📣 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 [...]


ERICA WP3 ‘Patient centred research’ Expert Working Group

WP3 PCEWG 31.05.23

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) [...]


ERICA WP4 Webinar: Framework for Patient Engagement in Clinical Trials


ERICA WP4 Clinical Trial Support webinar

Wednesday May 24th
From 15:00 to 16:00 CEST


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’.



ERICA Survey on ERNs Clinical Research


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 [...]


Launch of the Patient Engagement Resource Centre


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/


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

MOOC NEW VISUAL (940940px) (2)

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 [...]


MOOC 1: From Lab to Clinic: Translational Research For Rare Diseases

MOOC NEW VISUAL (940940px) from lab to clinic

🚀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!

More information here.