ADEFHIC es la única

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Para ser mas visibles tenemos una mascota llamada Hidry, es una gota que representa el exceso de liquido cefalorraquideo que caracteriza nuestra enfermedad, la Hipertensión Intracraneal Idiopática (HII), para saber mas pincha aquí

Para visibilizar la causa, en redes sociales usamos los hastag #CadaGotaSuma y #JuntosPorUnaCura, no dudes en usarlos en tus publicaciones y ayudarnos a que se vea la HII

El día 30 de Septiembre se celebra el día de la HII, solemos realizar campañas de visibilización de la enfermedad durante todo el mes de Septiembre, anímate a unirte a nuestra causa, un pequeño gesto nos puede llevar muy lejos.

Si eres afectado de HII, no dudes en contactar con ADEFHIC, también es muy importante que estemos registrados en el Instituto Carlos III, el objetivo de dicho registro es proporcionar a los profesionales de los sistemas de salud, investigadores y colectivos de pacientes y familiares afectados de una o varias enfermedades raras, un mayor nivel de conocimiento acerca del número y distribución geográfica de los pacientes afectados por éstas enfermedades, con el objetivo de fomentar la investigación, aumentar su visibilidad y favorecer la toma de decisiones para una adecuada planificación sanitaria y una correcta distribución de recursos.