Este sábado se emite el primer programa «Todos Somos Raros, Todos Somos Únicos» en La 2 de TVE

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Este espacio se enmarca dentro del proyecto “Telemaratón. Todos Somos Raros. Todos Somos Únicos”, impulsado por la Federación Española de Enfermedades Neuromusculares, la Federación Española de Enfermedades raras (FEDER) y la Fundación Isabel Gemio

– En cada programa asistirán como invitados personajes famosos que conocerán de primera mano la realidad de algunas personas afectadas por estas patologías.

9 de Enero – Ya está todo listo para la puesta en marcha del primer programa “Todos somos raros, todos somos únicos”. Esta iniciativa pretende concienciar a la sociedad y dar a conocer la importancia de este tipo de patologías. El programa comenzará el próximo 11 de enero a las 12:30 horas en La 2 de TVE.

Este espacio, que se prolongará hasta el mes de marzo, está enmarcado en la Telemaratón del movimiento «Todos somos raros, todos somos únicos» al que pertenecen la Federación Española de Enfermedades Neuromusculares (ASEM), la Federación Española de Enfermedades Raras (FEDER) y la Fundación Isabel Gemio.  El proyecto culminará el 2 de marzo con la celebración de una Telemaratón en directo en TVE.

Con esta iniciativa se pretende dar voz a los más 3 millones de afectados que en nuestro país sufren alguna de las 8.000 enfermedades poco frecuentes que existen en el mundo. El programa será presentado por Isabel Gemio y será un escaparate con las múltiples actividades del movimiento, como el abrazo solidario a la Mezquita de Córdoba o el calendario solidario con los jugadores del Atlético de Madrid.

En cada programa asistirán como invitados personajes famosos que conocerán de primera mano la realidad de algunos enfermos. Algunos de los famosos que ya han colaborado con nosotros son: Millán Salcedo, Miguel Ríos o Carlos Moyá. Asimismo, la mayor parte del programa estará formado por breves historias de enfermos y su entorno, que mostrarán las dificultades que supone vivir con algunas de estas patologías que no tienen tratamiento, son crónicas y en la mayoría de los casos degenerativas.

Durante el programa también se realizarán entrevistas a afectados que son ejemplo de integración en la sociedad, a pesar de sus diagnósticos, como Javier Botet, actor de películas de éxito como REC, Mamá o Las Brujas de Zugarramurdi, y que padece el Síndrome de Marfan, la misma enfermedad que padecieron Abraham Lincoln, la reina María de Escocia o Paganini.

Pero el fin último del programa será aportar, desde un matiz ameno, positivo y esperanzador, información sobre las enfermedades raras a través de científicos especialistas que hablarán de la situación actual en la investigación y últimos avances. Y por supuesto, el espectador podrá conocer nuevas tecnologías donde encontrar ayudas médicas y compartir con otras personas su realidad. Cada programa acabará mostrando el trabajo que realizan las asociaciones, tanto con su asistencia directa como recaudatoria y divulgativa.

Fuente: María de Luján Echandi García Herrera (FEDER)

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