Manifiesto Día Internacional de la Retinosis Pigmentaria

En los últimos años, al igual que en esta ocasión, con motivo del Día Mundial de la Retinosis Pigmentaria (29 de Septiembre), la Federación de Asociaciones de Retinosis Pigmentaria de España, FARPE,  viene realizando una serie de reivindicaciones sobre aspectos que considera esenciales para el colectivo que representa.

A pesar de que los avances en investigación han sido lentos, FARPE se considera en el derecho y la obligación de seguir manteniendo todos aquellos puntos expuestos en años anteriores e incidir sobre la importancia de la investigación médico- científica en distrofias de retina.

Dado que las Enfermedades Heredo-Degenerativas de la Retina son consideradas Enfermedades Raras (ER), y en vista de que 2013 ha sido declarado Año Español de las Enfermedades Raras por el Gobierno Español, ratificado por el Ministerio de Sanidad, Servicios Sociales e Igualdad, desde FARPE se ha presentado, en distintas reuniones, al Gabinete de la Ministra un dosier con 11 reivindicaciones esenciales para la mejora de la calidad de vida de las personas afectadas por distrofias de retina. En este sentido, desde FARPE, reivindicamos:

  • La elaboración de un mapa real de los Especialistas y Unidades identificadas que ya atienden, con acreditada experiencia, a personas afectadas por Distrofias de Retina (DR), con la colaboración de todas las CCAA. Estableciendo así un mapa de los Centros de Referencia y dotándolos de financiación suficiente para garantizar su calidad y sostenibilidad.
  • Que se impulse la investigación en Distrofias de Retina a través de los Centros de Referencia.
  • Que se publique una Guía de Práctica Clínica que establezca el procedimiento de derivación de pacientes para ser atendidos en un CSUR, a fin de garantizar la atención efectiva de las familias con Distrofias de la Retina en cualquier punto de la geografía española.
  • Que las Unidades de Referencia estatales trabajen en estrecha coordinación con los Hospitales y Centros de Salud a nivel local. Esta coordinación será vital para garantizar la calidad de la atención en la etapa de diagnóstico y seguimiento, a la vez que permitirá, allí donde sea posible, evitar los desplazamientos de los afectados, disminuyendo el impacto económico, familiar y social que origina el peregrinaje de las personas con Distrofias de Retina.
  • Que se logre el apoyo del IMSERSO en la homogeneización de los criterios de valoración a la discapacidad en las ER en las CCAA.

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