Asociación Síndrome de Marfan-España-SIMA .
VASCERN ePAG reps were at the @Federación Española de Enfermedades Raras (the Spanish Rare Disease Federation) meeting on #ERNs in #Spain this week, discussing the important topic of integration of the ERNs into the national healthcare system! From left to right, Elena de Moya (#HTAD Marfan Hilfe - Deutschland e.V.), Ines Hernando (ERN and Healthcare Director EURORDIS), Antonio Pugliese (#HTAD Asociación Síndrome de Marfan-España-SIMA .) and Luisa Botella (#HHT HHT España )! #patientinvolvement ... See more