Today is #InternationalWomensDay and we celebrate the many amazing women healthcare professionals and patient advocates in VASCERN, and the other 23 European Reference Networks, making a difference in the rare disease community!❤️?♀️
This month's #VASCERNSpotlights features one of those amazing women: Elena de Moya Rubio, European Patient Advocacy Group (ePAG) Co-Chair for the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG)!
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Elena is from Spain and represents the German Marfan Syndrome Patient Organisation, Marfan Hilfe - Deutschland e.V., She explains the challenges faced by rare disease patients, her most memorable moments since joining VASCERN and her hope that the European Reference Networks (ERNs) will lead to more awareness in the medical community for rare diseases so that no patient goes without a proper diagnosis and care.
#ERNeu #internationalwomensday2021
AssoMarfans The Marfan Foundation Marfan Initiative Österreich Association Belge du Syndrome de Marfan - ABSM asbl Marfan.dk Asociación Síndrome de Marfan-España-SIMA . Contactgroep Marfan Nederland Svenska Marfanföreningen EURORDIS - European Rare Diseases Organisation Syndrome de Marfan den-i.lu asbl MAGICA onlus ... See more