VASCERN Spotlights: Caroline van den Bosch

VASCERN Spotlights: Caroline van den Bosch In this month’s VASCERN Spotlights we meet Caroline van den Bosch from the Netherlands.  Caroline is the European Patient Advocacy Group (ePAG) Co-Chair for the Vascular Anomalies Working Group (VASCA WG) and shares with us how she became involved in VASCERN, the history behind…

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CPMS Update and HTAD WG case discussion

This month the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) held a videoconference meeting using the Clinical Patient Management System (CPMS) in order to discuss a complex patient case. Eight Healthcare Professional (HCP) Representatives from 7 European countries (Belgium, France, Germany, Hungary, The Netherlands, Sweden and the United Kingdom)…

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GeneReviews on Lymphedema-Distichiasis Syndrome updated

The GeneReviews, article on Lymphedema-Distichiasis syndrome (LDS), a disease covered by the Pediatric and Primary Lymphedema Working Group (PPL WG), has just been updated. It is co-authored by Prof Sahar Mansour (Co-Chair of the VASCERN PPL WG) and Dr. Peter Mortimer (PPL-WG member). Lymphedema-distichiasis syndrome is a syndromic lymphedema disorder…

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Launch of Share4Rare digital platform

A new rare disease project, called Share4Rare, has just been launched! This project, funded by a Horizon2020 grant from the European Commission, is a digital platform that aims build a virtual community that allows rare disease patients, carers, clinicians and researchers to join forces. Their goal: ” Create the largest…

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2019 Work Plan of the EU Health Programme

The document outlining the Third Programme for the Unionʼs action in the field of health (Work Programme for 2019) is now available to view here Many actions concern specifically the European Reference Networks: Rare disease registries for the European Reference Networks (2.1, pages 8-9, announcing a future call for proposals…

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