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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.

Nuestroobjetivo escompartirhistorias, cultivar unacomunidad, proporcionanlosúltimosdescubrimientosmédicos, conectar a las personas, y promover la producción de informacióndigna para pacientes.¡Ayúdanosaalcanzarestosobjetivoscompartiendo con nosotros un pocosobreti!

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