VASCERN Spotlights: Dr Sophie Dupuis-Girod

This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how she became interested in this rare vascular disease, her involvement in VASCERN and what she believes are the greatest achievements…

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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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VASCERN Spotlights: Claudia Crocione

This month we have the pleasure to feature Claudia Crocione, our ePAG Co-Chair for the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group, in the VASCERN Spotlight. Claudia is the Managing Director of HHT Europe and she shares with us how she became involved with VASCERN and her experience so far, what…

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VASCERN Spotlights: Dr Alessandro Pini

This month we had the chance to interview Dr. Alessandro Pini, a cardiologist from Milan, Italy. Dr. Pini is Chair of VASCERN’s eHealth Working Group as well as the Heritable Thoracic Aortic Diseases (HTAD) and Medium-sized Arteries (MSA) Working Groups. Read about how Dr. Pini became involved in VASCERN, his…

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VASCERN Spotlights: Lise Murphy

VASCERN Spotlights: Lise Murphy “What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates…

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VASCERN Spotlights: Dr. Robert Damstra

VASCERN Spotlights: Dr. Robert Damstra  What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to…

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VASCERN Spotlights: Professor Claire Shovlin

VASCERN Spotlights: Professor Claire Shovlin I hope that across the diseases that VASCERN champions, the wisdom, dedication and experience of the medical doctors can be channeled into further, genuine healthcare improvements for patients and their families. It is with great pleasure that we present this month’s member in the VASCERN…

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VASCERN Spotlights: Professor Julie De Backer

VASCERN Spotlights: Professor Julie De Backer The ultimate goal is to provide patients with these rare diseases with the right care in a timely manner – my greatest hope, therefore, is that the central ERN message “Share – Care – Cure” will become “Excellent Sharing – Excellent Caring – Excellent…

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VASCERN Spotlights: Dr Leema Robert

VASCERN Spotlights: Dr Leema Robert What really interested me about the VASCERN network was that it was not just about the diagnosis but also the management of these patients.   To end Ehlers-Danlos Syndrome (EDS) awareness month on a high note, we have the pleasure to present this month’s member…

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