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July 2022
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ERN-ITHACA Projects
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ERN ITHACA WG Research Meeting - September 14
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The WG Research of ERN ITHACA is organising its next virtual meeting dedicated to collaborative research projects. The WG chairs invite all interested members and collaborators of ERN ITHACA, not limited to the members of the working group, to present a collaborative research project, during this next meeting.
Proposals in all stages of development will be considered for this meeting, so please do not hesitate to express your interest, even if your project is reaching its final stage.
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The meeting will take place 14th September 2022, 14:00 to 16:30, in a virtual setting (please save the date!).
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ERN ITHACA Workshop EuroNDD 2023 - Program Building
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The ERN ITHACA Neurodevelopmental Disorder Workgroup has been working on the program of the EuroNDD 2023, the first European Workshop on interdisciplinary perspectives for Neurodevelopmental Disorders which will be held in Amsterdam in April 20 – 21.
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The aim is to select a wide diversity of talks in order to establish a program in which we can discuss NDD from an interdisciplinary perspective. We invite you to support its Scientific Committee in composing a list of possible speakers and themes by filling in this online form. We greatly thank you in advance for your participation!
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ERN ITHACA Board Meeting - Participation Form
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As already announced, the ERN ITHACA will hold its annual Board Meeting in Budapest on the 8,9 and 10 of December 2022. For organisational purposes, we would greatly appreciate if you could fill out this participation form - especially if you already know you could not attend!
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ERN ITHACA Webinar #4 recording now available on our website
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European News
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Trans ERN Webinar on William Beuren Syndrome
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Presented by Dr. Verena Gravenhorst, Prof. Olivia Boyer, Dr. Giovanni Mosiello, and Dr. Annalisa Scopinaro, and co organised by the ERN-ITHACA, ERN eUROGEN and ERNKNet, this webinar "the William Beuren Syndrome, A focus on long term patient care", will discuss all uro-nephrological aspects of the Williams-Beuren syndrome, including clinical scenarios. It will be of interest to both healthcare professionals and patient organisations.
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The webinar will be held on July 6 from 18h00 to 19h15.
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New guide on patient involvement in clinical practice guidelines & clinical decision support tools
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If you are interested in knowing more about how Clinical Practice Guidelines and Clinical Decision Support Tools are developed and how the patient voice can be successfully taken into account, don’t miss this practical guide developed by EURORDIS, the European Lung Foundation and the European Patient Advocacy Group (ePAG) Working Group.
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This publication will lead to a reflection within the ERN ITHACA Guideline and Consensus WG on how to optimize patient imput in ERN ITHACA guidelines.
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Launch of the Innovation Management Toolbox (IMT)
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EJP RD is delighted to announce the launch on June 30th, 2022 of the Innovation Management Toolbox (IMT), a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs. The database will be maintained actively!
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Call for collaborative clinical research on developmental disorders
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