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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Aim: Learning from monogenic diabetes as a model of precision medicine by genetic diagnosis and elaborating a proposal of a study design to apply precision medicine in other rare genetic diseases.
Target group: medical doctors, geneticists & molecular researchers affiliated to an European Reference Networks
Registration deadline: 23 March
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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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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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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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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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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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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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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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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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