VASCERN Spotlights: Françoise Steinbach

This month we feature Françoise Steinbach, the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Heritable Thoracic Aortic Working Group (HTAD WG), from France. Françoise tells us how she became involved with VASCERN, what people should know about the reality of living with Marfan syndrome and how she hopes…

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VASCERN Spotlights: Hans-Jurgen Mager

This month, we interview Dr. Hans-Jurgen Mager, a pulmonologist from the Netherlands working at St. Antonius Hospital and member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG). Dr. Mager tells us how his passion for HHT was born, the work he has achieved in advancing diagnostic and therapeutic research…

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VASCERN Spotlights: Erik Björck

We are very happy to present our first VASCERN Spotlights article of 2021 featuring Dr. Erik Björck: a clinical geneticist from Stockholm, Sweden and member of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG). Dr. Björck tells us why he enjoys being a clinical geneticist, the challenges of being…

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VASCERN Spotlights: Christina Grabowski

This month we talk to Christina Grabowski, European Patient Advocacy Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany.  Christina represents the German HHT Patient Organisation – Morbus Osler Selbsthilfe e. V and gives us her thoughts on the role of a patient…

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VASCERN Spotlights: Andrea Diociaiuti

In this edition of VASCERN Spotlights we interview Dr. Andrea Diociaiuti, a dermatologist from Italy and member of the Vascular Anomalies Working Group (VASCA WG). Dr. Diociaiuti shares what attracted him to the specialization of dermatology and vascular anomaly management, the challenges of working in the rare disease field and…

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VASCERN Spotlights: Charissa Frank

This month it’s Charissa Frank, European Patient Advocate Group (ePAG) Deputy Co-Chair for the Medium-sized Arteries Working Group (MSA WG) from Belgium, who is in the VASCERN Spotlight! Charissa is a patient advocate for both VASCERN and ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal…

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VASCERN Spotlights: Dr. Sarah Thomis

This month we had the chance to interview Dr. Sarah Thomis, a vascular surgeon from Belgium and member of the Pediatric and Primary Lymphedema Working Group (PPL WG). Dr. Thomis tells us how she became involved with VASCERN, what she believes are the greatest accomplishments of VASCERN to date and…

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VASCERN Spotlights: Manuela Lourenço Marques

This month we have the pleasure to interview Manuela Lourenço Marques from Portugal. Manuela is the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG). She shares her story of becoming a patient advocate, starting a patient association, and what she values…

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VASCERN Spotlights: Maria Barea

This month we had the chance to talk to European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Vascular Anomalies Working Group (VASCA WG), Maria Barea. Maria represents the patient organization VASCAPA from Belgium and shares with us the most memorable moments of her VASCERN experience so far, her greatest…

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