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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EJP-RD launches its first free MOOC!

The European Joint Programme on Rare Diseases (EJP RD) has launched its first free MOOC entitled “Diagnosing Rare Diseases: from the Clinic to Research and back“! Register here This MOOC is the result of hard work from several EJP RD partners, in particular ERN ITHACA (represented by Prof Laurence Faivre), ERN GENTURIS (represented…

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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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Guest case from Denmark discussed in CPMS

During this month’s Vascular Anomalies Working Group (VASCA WG)‘s CPMS discussion, a guest case from a Danish Healthcare professional was discussed. The Danish healthcare professional joined 7 VASCA WG members from 5 European countries in order to receive advice on their complex vascular anomaly case. The group also had time…

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Events that took place for World Lymphedema Day 2021!

World Lymphedema Day, March 6th, 2021 was celebrated across Europe with a remarkable collaboration among patient associations in Europe. Twenty-seven patient associations collaborated to co-sign a manifest, translated into 11 languages, to express their views and wishes for patients living with lymphedema. A group of associations went further by creating…

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