Ser diagnosticado con una enfermedad rara puede provocar diversas emociones; la experiencia de todos es única para ellos. Algunos se sienten aliviados de finalmente poner un nombre a sus síntomas;…
Nosotroscreemos que lospacientes de enfermedadesraras son personas, no undiagnóstico. A través de la educación, conciencia, y unpoco de humor – ayudamospacientes, suscuidadores y simpatizantesbrindándolesnoticias e historiasrelevantesya menudo inspiradoras.
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