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3 ERN workshops opened for registration

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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 [...]

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ERICA Survey on ERNs Clinical Research

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erica-start

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 [...]

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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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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 [...]

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

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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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EJP RD: Online Training Statistical and Operational Challenges with Master Protocols

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Statistical and Operational Challenges with Master Protocols (1)

During this EJPRD webinar, distinguished lecturer Franz Köning will explain what is meant by master protocols comparing basket, umbrella and platform trials. Great opportunity to gain valuable insights into cutting-edge statistical methods for Rare Diseases Clinical Trials. Don’t miss this incredible opportunity to expand your knowledge and enhance your research skills.

📚Title: Statistical and Operational Challenges with Master Protocols

🇬🇧Language: English

🚨Registration deadline: 23 March 2023

ℹ️: https://www.ejprarediseases.org/event/statistical-and-operational-challenges-with-master-protocols/

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Congratulations to Alberto Pereira

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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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IRDiRC: Opening for a new member for Interdisciplinary Scientific Committee

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IRDiRC ISC

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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