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ERN-ITHACA Projects
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ERN-ITHACA Webinar: "ERN ITHACA guidelines development: From patients to guidelines and back again”
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With this new webinar organised by the ERN ITHACA Guidelines Workgroup, we want to present to you some examples of ERN ITHACA guidelines, recommendations on how to develop them, and to reflect on how to move our work forward.
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To know more about the webinar and to read about the program, please visit this ERN ITHACA webpage.
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EuroNDD Workshop | Submit yout abstract until November 18
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On April 20th – 21st 2023, the ERN ITHACA is organizing a meeting in Amsterdam with the aim of bringing together a broad professional audience for a multidisciplinary perspective on ‘rare genetic neurodevelopmental disorders’
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This workshop is financially supported with funds from the EU, therefore there is no registration fee. The program will consist of plenary & parallel sessions and panel discussions. Part of the speakers are invited; the other part is based on abstract selection.
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The sessions will cover the following themes:
Applied and emerging therapies;
Genetics of neurodevelopmental diseases;
Profound and multiple learning disabilities;
Mechanisms of disease, model systems & translational pre-clinical work;
Ethical, legal, and psycho-social aspects;
Genes and pathways.
Abstracts can be submitted at this ERN ITHACA webpage before November 18.
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ERN-ITHACA Patients-Clinicians Team-building Sessions
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The ERN ITHACA & Eurordis will organise, in November, three team-building sessions for patient representatives and clinicians.
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The overall objective of these sessions is to align on goals and work strategies, and to identify areas of strength and of improvement in our current collaboration.
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These sessions will be held on:
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November 16, 11h00-13h00;
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November 23, 10h00-12h00;
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November 30, 10h00-12h00.
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To participate in these workshops, please register beforehand via this online form.
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Upcoming events
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European News
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SysNDD: more than just a gene list! A call for NDD expert curators
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The new SysNDD database has replaced its predecessor SysID as a regularly updated, manually expert curated database on NDD associated genes and related diseases and phenotypes.
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For a one-time re-curation of all entries we are searching for expert curators who are interested in contributing their expertise to this resource, to specifically take care of their favorite genes and to be involved in possible future studies and publications on SysNDD.
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ERN Research Mobility Fellowship
EJP RD is glad to announce that the last call for Research Mobility Fellowships is now open until November, 13th, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
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Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.
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The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.
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Call for collaborative clinical research on developmental disorders
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