El Día de las Enfermedades Raras se lleva a cabo el último día de febrero de cada año. El principal objetivo del Día de las Enfermedades Raras es concienciar al público en general y a los responsables de la toma de decisiones sobre las enfermedades raras y su impacto en la vida de los pacientes.
El primer Día de las Enfermedades Raras fue lanzado por EURORDIS-Rare Diseases Europe y su Consejo de Alianzas Nacionales y se celebró en 2008 el 29 de febrero, una fecha ‘rara’ que ocurre solo una vez cada cuatro años. Desde entonces, se celebra el último día de febrero, un mes conocido por tener un número “raro” de días.
Crear conciencia sobre las enfermedades raras es muy importante porque 1 de cada 20 personas vivirá con una enfermedad rara en algún momento de su vida. A pesar de esto, no existe cura para la mayoría de las enfermedades raras y muchas no se diagnostican. El Día de las Enfermedades Raras mejora el conocimiento entre el público en general sobre las enfermedades raras al tiempo que anima a los investigadores y a los responsables de la toma de decisiones a abordar las necesidades de quienes viven con enfermedades raras.
Hay más de 300 millones de personas en todo el mundo que viven con una enfermedad rara; el 72% son de origen genético y de éstas, el 70% aparecen en la infancia. Juntos, a través de las fronteras y a través de las más de 6000 enfermedades raras, debemos trabajar hacia un acceso más equitativo al diagnóstico, tratamiento, atención y asistencia social.
El mensaje clave para el Día de las Enfermedades Raras 2021 es que: Rare is many. Rare is strong. Rare is proud.
Fuente:
Rare Disease Day. Link: Clic Aquí
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