ERN Research Training Workshops funding opportunity now open for applications

EJP RD News

The ERN Research Training Workshops funding opportunity is now open for applications until October 1st. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be…

ERN Workshop on Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled « Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases » aimed at facilitating discussion and exchange of knowledge on the M&S methodologies and strategies as innovative and promising enough for facing complex multifactorial or rare diseases and conditions that require highly specialised treatments and resources is being organised…

ERN Workshop: Functional exploration of genetic variants in cardiac diseases

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using Drosophila, C. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de…

ERN Workshop: Comprehensive gene profiling, molecular tumor board (MTB) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled « Comprehensive gene profiling, molecular tumor board (MTB) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers » aimed at increasing physicians’ awareness on the possibilities of comprehensive genomic profiling in gene-guided planning of modern cancer treatment and addressing multidisciplinary aspects between specialists who are working…

ERN Workshop on ectodermal dysplasias: Training course and update

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In the context of EJP RD’s ERN Workshops, a face-to-face training course on “Ectodermal dysplasias: Training course and update” aimed at informing and training participants in basic and practical aspects on Ectodermal Dysplasias (ED) and Incontinentia Pigmenti (IP) with specific focus on recent research update research and innovative care is being organised by Smail Hadj-Rabia of ERN-Skin, Department of Dermatology, Necker-Enfants Malades…

ERN Workshop: From high throughput sequencing to diagnosis in immune mediated disorders

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “From high throughput sequencing to diagnosis in immune mediated disorders” aimed at educating young researchers and clinician on which techniques and functional tests are available and appropriate to solve challenging clinical cases in the field of immune mediated disorders and inborn errors of immunity (IEI) is being organised by the…

ERN Workshop: Translational research on bone impairment in rare diseases

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon. The in-person event will take place over…

ERN Workshop on future research on innovative diagnostics and interdisciplinary treatment for spina bifida (spinal dysraphism)

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In the context of EJP RD’s ERN Workshops, an in-person workshop titled « Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment » aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina…

ERN Workshop on endocrine cancer: A challenge in adults and children

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In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…

ERN Workshop on anonymisation and pseudonymisation of rare disease patients⁠: Legal and technical aspects

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Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00 CET. Organisers/Moderators : Franz Schaefer and Clémence Le Cornec Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center) Description: This workshop will be the first of the…