ISSVA 2018 International Workshop

The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended…

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New Eurordis Rare Barometer Voices Survey

Eurordis’ Rare Barometer Voices has a new survey entitled “Sharing my health information: why, how, and with whom?” that aims to collect the thoughts of patients (and/or their family members/carers) on the topics of data protection and data sharing. With the increased number of initiatives requesting access to patient data to support…

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