FARPE PARTICIPÓ EN EL ACTO OFICIAL DEL DÍA MUNDIAL DE LAS ENFERMEDADES RARAS

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Bajo el lema, “Si se quiere se puede”, la Federación Española de Enfermedades Raras (FEDER), celebró el Acto Oficial del Día Mundial en el Senado de España. Al acto asistió Germán López Fuentes, Presidente de FARPE y FUNDALUCE, representando a las personas que padecern retinosis pigmentaria u otras distrofias de la retina.

 En primer lugar, a través del testimonio de personas con enfermedades poco frecuentes, pudimos conocer de cerca su historia y acercarnos a su realidad.

Posteriormente, Milagros Jiménez Presa, Felix Casado, Sandra Beltrán y el pequeño Santi, leyeron  la Declaración por el Día Mundial de las Enfermedades Raras, y el Grupo de El Desván del Duende interpretó  la canción “Dí que si”, un himno a la esperanza que forma parte de su proyecto www.sisequieresepuede.com y que gracias a él han sido ganadores del Premio FEDER Extremadura.

Su Alteza Real la Princesa de Asturias pronunció unas palabras, en las que destacó que en «este Año Español de las Enfermedades Raras, hay muchas maneras de acompañar y comprometerse. No voy a enumerar la cantidad de iniciativas que desde Feder estáis promoviendo. Pero como en su día os dije, me gustaría ser vuestra voz y parte de ese compromiso es pedir a quien nos escuche que por favor se acerquen personalmente, o a través de las diversas posibilidades que ofrece la federación, y que conozcan cómo viven estas familias».

También añadió que le gustaría «llamar la atención sobre el trabajo fundamental que hacéis desde las asociaciones y desde la federación de enfermedades raras. Muchas veces no somos conscientes de ello y creo que es justo decirlo hoy aquí. Gracias por vuestro trabajo, que cada día se vuelve más difícil por las complicaciones de la situación actual. El mérito de seguir ahí para ayudar a tantas familias angustiadas que no saben qué hacer cuando les diagnostican una enfermedad poco frecuente, es enorme. Un mérito y un esfuerzo que quiero reconocer y agradecer».

Premios FEDER

Durante el acto se hizo entrega de los Premios FEDER 2013:

  • Premio a la Embajadora de las Enfermedades Raras, a Isabel Gemio, presidenta de la Fundación Isabel Gemio para la investigación de las Distrofias Musculares y otras enfermedades raras.
  • Premio a la Solidaridad, a Vicente del Bosque, Marqués de Del Bosque, seleccionador Nacional de Fútbol.
  • Premio a la labor periodística, a Irene Tato, directora de la Agencia Salud y Comunicación.
  • Premio a la Responsabilidad Social, a la Fundación Genzyme, y recogió el Premio Fernando Royo, Presidente de la Fundación.
  • Premio a Toda una Vida por las Enfermedades Raras, a Nicolás Beltrán, presidente estatal de la Asociación de Afectados del Síndrome de Marfan.
  • Premio a la promoción y defensa de los derechos, a la Fundación Fernando Pombo, recogiendo el premio Carmen Pombo, Directora de la Fundación.
  • Premio a la investigación en enfermedades raras, al Grupo de Trabajo de Genética Clínica y Enfermedades Raras de Semfyc (Sociedad Española de Medicina de Familia y Comunitaria), y recogió el galardón Miguel García, Coordinador del Grupo de Trabajo SEMFYC.
  • Premio al Entorno Educativo, al Colegio La Salle Virgen del Mar de Almería, y recogió el premio Inocencio Lorite, Director general del Colegio La Salle Virgen del Mar de Almería.
  • Premio especial autonómico–Andalucía, a Carmen Osuna, profesora de la Facultad de Medicina de la Universidad de Sevilla, recogiendo el galardón Moisés Abascal.
  • Premio especial autonómico–Cataluña, a Teresa Pampols, consultor senior de la Sección de Errores Congénitos del Metabolismo-IBC, del servicio de Bioquímica y Genética Molecular del Hospital Clínico de Barcelona.
  • Premio especial autonómico–Comunidad Valenciana, a Antonio Pérez-Aytes, responsable de la Unidad de Dismorfología y genética Reproductiva del Hospital Universitario y Politécnico La Fe de Valencia.
  • Premio especial autonómico–Madrid, a la Fundación Roviralta, recogiendo el galardón Javier Serra, Director de la Fundación.
  • Premio especial autonómico–Murcia, David Araujo-Vilar, profesor titular de medicina de la Facultad de Medicina de la Universidad de Santiago de Compostela.
  • Premio especial autonómico–País Vasco, a Antonio Álvarez, presidente de la Federación Española de Enfermedades Neuromusculares (ASEM).
  • Premio especial autonómico–Extremadura, El Desván del Duende, recogiendo el premio José Manuel Díez, Miguel Vivas, Jorge Fernández, y Antonio Habas.
  • Reconocimiento honorífico a los expresidentes de FEDER, entregándoles una placa individual a Moisés Abascal, Rosa Sánchez de Vega e Isabel Calvo

Fuente:

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