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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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.

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ERICA WP4 Webinar: Introduction on Patient-Reported Outcomes and considerations before including them in a clinical trial. Study case from the ERN-EuroBloodNet

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ERICA WP4 Clinical Trial Support webinar

Wednesday May 10th 2023

From 12:30 to 13:30 CEST

The main objective of the webinar will be to give an overview of Patient-Reported Outcomes Measures (PROMs) and Patient-Reported Experience Measures (PREMs) in clinical research.

Céline Desvignes-Gleizes from Mapi Research Trust will provide an introduction on PROMs and PREMs and accordingly, will address the following questions:

What are PROMs & PREMs? What do I need to know about PROMs & PREMs before including them in a clinical trial? At what point of the preparation of a clinical [...]

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Congratulations to Alberto Pereira

Albertos oratie ERICA

ERICA and Endo-ERN Network Coordinator Professor Alberto Pereira held his inspiring Inaugural Lecture in January 26th on the topic 2034 , where he considered the possibilities for rare disease care during the next decade at Amsterdam UMC and beyond. As the coordinator of two important projects that will change the rare disease landscape in Europe – Endo-ERN & ERICA – the lecture was a welcome opportunity for all his colleagues to glimpse the future that will be the work of the next decade.

Congratulations Alberto on behalf of ERICA Consortium and thank you for being a great ambassador for [...]

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3rd ERICA General Assembly 6-7th July 2023 in Madrid, Spain

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The ERICA 3rd General Assembly took place 6-7 July in Madrid as a face-to-face meeting.

Hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP). Coordination office of ERN-TransplantChild.

The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

The aim of the General Assembly (GA) is to inform all the beneficiaries about the progress of the planned and completed ERICA project activities in more detail and to raise more awareness [...]

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IRDiRC: Opening for a new member for Interdisciplinary Scientific Committee

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The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies.
ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited to send their resume, biosketch and letter of motivation to  scisec-irdirc@ejprarediseases.org before the 2nd of April, 2023.
More information about the Interdisciplinary Scientific Committee (ISC): https://irdirc.org/isc/

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ERICA WP4 Webinar: Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites

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ERICA WP4 Clinical Trial Support webinar “Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites”

Diego Ardigò, Chiesi Group Parma, Italy

14th April 2023 12:30-13:30 (CET)

The webinar will focus on describing the key elements for success in participating as investigator in an industry sponsored clinical, with a specific emphasis on rare diseases, highlighting the key needs from the industry side and the common reasons for failure. The goal is to get to a common understanding of the key requirements for conducting such studies, [...]

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