El pasado martes 26 de febrero, se celebró una rueda de prensa en el Ayuntamiento de Gandía para conmemorar el Día Mundial de las Enfermedades Raras y presentar la Campaña de recogida de Tapones Solidarios a favor de FEDER.

Comparecieron:

– Dª. Pilar Gavilá. Concejal de Bienestar Social.
– Dª. Luisa Laporta. Concejal de Sanidad.
– Dª. Zaira Martín – Villalba Ceballos Responsable de FEDER C.V.
– Dª. Lorena Benavent. Directora y Fisioterapeuta del Centro Avanzamos de Gandía.

Esta es la nota de prensa oficial:

Gandia impulsa una campaña solidaria de recogida de tapones para la investigación de enfermedades raras.

• El Ayuntamiento de Gandia conmemora así el Día Mundial de las Enfermedades Raras.

• Gavilá destaca que “hemos querido unirnos a la celebración de este día, solidarizándose con las personas que día a día se enfrentan a este tipo de enfermedades”.

• El “Centro Avanzamos” de Gandía coordinará la recogida y entregará los tapones a la planta de reciclaje para su transformación. Los fondos recaudados irán destinados íntegramente a FEDER.

• Esta tarde a las 19.30 horas en el Foro Manuel Broseta habrá una conferencia titulada “Solidarízate con las Enfermedades Raras”.

Gandia, 26 de febrero 2013. – Aprovechando que el 28 de febrero se conmemora el Día Mundial de las Enfermedades Raras, el Ayuntamiento de Gandia junto al Centro Avanzamos, han iniciado una campaña de recogida de tapones a favor de la Federación Española de Enfermedades Raras, FEDER, una entidad compuesta por más de 200 asociaciones, que trabaja de manera integral con las familias afectadas a través de proyectos y servicios destinados a mejorar la calidad de vida de estas personas.

Por este motivo, Pilar Gavilà, concejala de Bienestar Social, Luisa Laporta, concejala de Sanidad, Zaira Martín-Villalba, representante de FEDER, y Lorena Benavent, Directora del Centro Avanzamos de Gandia, han comparecido en rueda de prensa para explicar las acciones que se van a llevar a cabo durante la campaña, que estará coordinada por el “Centro Avanzamos”, un centro de rehabilitación y estimulación integral de niños y adultos que ofrece tratamientos de fisioterapia, logopedia y psicología. Además, parte de los pacientes que atiende este centro son personas que padecen alguna de las enfermedades raras.

Pilar Gavilà ha comentado que “desde el Ayuntamiento hemos querido unirnos a la celebración de este día, solidarizándose con las personas que día a día se enfrentan a este tipo de enfermedades. Como ya hicieron en ocasiones anteriores, tanto con la familia de Ainhoa Escura, como con la familia de Nahiara Laredo, en el partido de fútbol celebrado en Fort-Llopis del Grau, en el que se logró recaudar más de 1800 euros”.

Durante la campaña, se instalarán 12 puntos oficiales de recogida: 11 en edificios municipales (Centros Sociales de Beniopa, Plaza Elíptica, Corea, Raval, Rois de Corella, Grado, Benipeixcar y Santa Ana, Ayuntamiento, Edificio Tossal y Centro de Convivencia Manuel Broseta) y uno en el “Centro Avanzamos” (c/ San Rafael 23, junto a Correos). El “Centro Avanzamos” coordinará la recogida y entregará los tapones a la planta de reciclaje para su transformación. Los fondos recaudados irán destinados íntegramente a FEDER. El “Centro Avanzamos” también dispone de pulseras solidarias para que la gente haga su donativo.

Por otra parte, Luisa Laporta ha señalado que “como estrategias para mejorar el conocimiento de estas enfermedades incluyen el desarrollo de un registro de estas enfermedades y el fomento de la investigación, la prevención mediante diagnóstico genético y la detección precoz, la formación continuada de los profesionales, y la coordinación entre ap y atención especializada en centros y servicios sociales ”

Esta tarde tendrá lugar una conferencia titulada “Solidarízate con las enfermedades raras” a partir de las 19.30 horas en el Foro Manuel Broseta donde intervendrán Zaira Martín-Villalba, representante de FEDER, y profesionales del “Centro Avanzamos”, así como el padre de Ainhoa Escura, único caso en España de Síndrome de Midas, que contarán sus experiencias. Pilar Gavilà ha invitado a toda la ciudadanía a participar, ya que todos podemos sufrir un caso en nuestra familia.

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