EURORDIS Membership Meeting 2019 in Bucharest

The 2019 EURORDIS Membership Meeting took place in Bucharest, Romania from May 17-18, 2019. This meeting assembled over 200 representatives of people living with a rare disease. During this event, Eurodis and its over 800 member organisations released a new position paper entitled Achieving Holistic Person-Centred Care to Leave No One…

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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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