¿Qué es el Día mundial de las Enfermedades Raras?
El Día Mundial es una gran campaña anual de sensibilización que organiza FEDER en el primer trimestre del año.
En 2014 se celebrará la VI edición de la Campaña y se realizará en coordinación con la Organización Europea de las Enfermedades Raras (EURORDIS).
El Día Mundial de las ER es una campaña multicanal y viral que busca aumentar la repercusión del las ER en España.
Este año la Federación Española de Enfermedades Raras va a centrar sus esfuerzos en trasladar la realidad a la que se enfrentan día a día los niños y niñas con ER a la hora de cursar sus estudios.
Para ello, y a través de la experiencia de sus más de 250 asociados de pacientes, FEDER lanzará un Informe que dará luz sobre las dificultades a las que se enfrentan día a día las personas con una ER en el entorno educativo.
Objetivos Generales Campaña
OG1: Sensibilizar, informar y formar sobre la problemática de las enfermedades poco frecuentes a la sociedad española.
OG2: Posicionar a las enfermedades raras en la agenda de la Administración y de los Medios de Comunicación.
OG3: Trasladar la importancia de la unión, la cohesión y la movilización para hacer posible el cambio social en enfermedades poco frecuentes.
OG4: Vincular la esperanza y el trabajo que día a día hace la Federación como el primer paso para frenar esas situaciones de falta de equidad.
Objetivos Específicos:
OE1: concienciar de la importancia de cuidar nuestra educación para lograr una verdadera integración e inclusión desde los primeros años de vida.
OE2: concienciar sobre las patologías poco frecuentes y atraer la atención sobre las grandes situaciones de falta de equidad e injusticias que viven las familias.
Ejes principales:
– Plantear propuestas y soluciones.
– Involucrar a todas las partes implicadas.
– Movilizar a todo el colectivo de asociaciones de enfermedades poco frecuentes en España.
¿A quién va dirigido el Día Mundial?
| Asociaciones de pacientes | Industria Farmacéutica |
| Medios de comunicación | Colegios de Profesionales |
| Sociedad Civil | Sociedades Científicas |
| Administración nacional | Fundaciones |
| Administración autonómica | Asociaciones y organizaciones |
Actividades programadas
14 de febrero de 2014: Entrevista para el VCF.
23 de febrero de 2014: Partido VCF. Está previsto que diversos voluntarios acudan a Mestalla. Allí, informarán de qué son las enfermedades raras, sus características y de FEDER. Tabién dispondrán de huchas con el fin de recaudar fondos.
25 de febrero de 2014: Rueda de prensa para la Presentación de la Campaña del Día mundial 2014. Tendrá lugar en salón de actos del Muy Ilustre colegio Oficial de Farmacéuticos de Valencia a las 12:00 horas.
26 de febrero de 2014:
- IV Jornada “Investigar es avanzar” junto con el Ciberer. Desde las 9:15 horas hasta las 14:00h. Se celebrará en el Centro de Investigación Príncipe Felipe (C/ Eduardo Primo Yúfera, 3. Valencia).
Por cuestiones de aforo, la inscripción es obligatoria. Para ello, dirigirse a:
eventos@ciberer.es – Móvil: 672 495 444
- Mesas informativas Asociación AVALUS en el Hospital Universitario La Fe de Valencia.
27 de febrero de 2014: Acto para el Día Mundial de las Enfermedades Raras. Dirección General de Salud Pública/FISABIO Salud Pública.
Tendrá lugar en el Salón de Actos del Edificio de Salud Pública (Av. Cataluña, 21). Dará comienzo a las 11:30 horas hasta las 13:30h.
Inscripciones en: www.sp.san.gva.es
28 de febrero de 2014:
- Mesas informativas en los principales hospitales de Valencia y Castellón. De 10:00 a 13:00 horas.
- Cambio contenedor Tapones solidarios Universidad Politécnica de Valencia.
- Entrega premios FEDER en el Senado (Madrid)
1 de marzo de 2014: IV Jornada lúdica por las ER. En la Plaza de la Virgen y dirigida a los más pequeños, contará con pintacaras, animación, un taller de “Las ER van al cole” y la actuación de los Asprona Timbals. Esta jornada se llevará a cabo desde las 10:00 horas hasta las 13:00 horas.
2 de marzo de 2014: Telemaratón por las ER. La totalidad de los fondos recaudados se destinará en un 75% a la investigación y en un 25% al fortalecimiento del movimiento asociativo.
5 de marzo de 2014: I Jornada de investigación en Enfermedades Raras. INCLIVA.
Se realizará en el Salón de Actos de INCLIVA (Av. Menéndez Pelayo) desde las 16:00 a las 20:00 horas.
Inscripción gratuita y obligatoria a través del siguiente enlace:
https://fundanet.fihcuv.san.gva.es/cursoscongresos (Apartado CONGRESOS)
68 plazas. Reserva de plaza por riguroso orden de inscripción.
14 de marzo de 2014: Acto en el Liceo Francés. Se realizará la presentación del proyecto “Las ER van al cole con Federito” que ya han llevado a cabo en este centro. Se les hará entrega de un Diploma acreditativo de participación en el Proyecto.
12 o 26 de marzo de 2014: Jornada UV ( pendiente de confirmar)
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