ERICA WP4 Webinar: Definition of orphan drug by the EMA

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ERICA WP4 Clinical Trial Support webinar “Definition of orphan drug by the EMA”

Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy

The so-called ‘orphan drugs’ are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions.

The process from the discovery of a new molecule to its marketing is long (10 years in average), expensive (several tens of millions of euros) and very uncertain (among [...]

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ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial

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In the ERICA WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” we will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

Organised by ERICA in collaboration with EJP RD and ERN BOND

 

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Training on strategies to foster solutions of undiagnosed rare disease

Training on strategies to foster solutions of undiagnosed rare disease cases

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.

Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in [...]

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EJP RD Joint Transnational Call now open!

JTC 2023 (2)

The European Joint Programme on Rare Diseases launches today the Joint Transnational Call 2023, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.

This year’s topic is: “Natural History Studies addressing unmet needs in Rare Diseases” The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients.

Don’t miss [...]

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EJP RD – ERN Workshop RARE TOGETHER

RARE TOGETHER

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center.

The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.

Registration is open here, and closes on February 1st.

The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.

 [...]

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ERN-ITHACA Multidisciplinary Fetal Diagnostics Winter School

ERN Ithaca Winter School

The ERN-ITHACA Multidisciplinary Fetal Diagnostics Winter School will be held in Paris, December 7-8, 2022.

This Winter School aims to address a learning gap in fetal phenotyping, genetic analysis, and data interpretation. As a single-day course it will include basic lectures and in depth-workshops on phenotyping, prenatal genomic testing, and the implications for genetic counselling. To finalize, the program will bridge the addressed fields with interdisciplinary case discussions.

The course is open to specialists and specialists in training in the fields of clinical and laboratory genetics, bioinformatics, obstetrics, pathology with a special interest in prenatal medicine.

The program gathers excellent [...]

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International Conference on Clinical Research Networks for Rare Diseases

International Conference on Clinical Research Networks for Rare Diseases

The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.

It is not possible anymore to register for in-person participation, but you can register for the online participation.

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Now available: WP5 Educational Webinar 2 “Practical guide on how to use the Catalogue of services and the IMT”

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In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), Rosan Vegter (Scientific and Education Manager at EATRIS) together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), provided practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website

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IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research

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IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). The new RSC “brings broad expertise across different stakeholders and geographies allowing for a balanced synergy that will provide insights and guidance into the advancement of IRDiRCs mission” said David A. Pearce, Chair of IRDiRC.

Read the full press release here.

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ERN Data Management Strategy Workshop in Heidelberg on the 17th-18th of October 2022

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WP2 ERICA WP2 Data Collection, Integration and Sharing organised a face-to-face workshop on building an ERN Data Management Strategy Workshop in Heidelberg on the 17th-18th of October 2022. This multi-stakeholders workshop focused on developing a strategic and operational ERNs Data Management Strategy.

Session Presentations

The presentations of the workshop sessions are now available. In order to download the presentations a password is required. Please request access via ERICA office.

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