{"id":3739,"date":"2018-05-18T06:48:57","date_gmt":"2018-05-18T06:48:57","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/18\/feder-se-une-al-dia-internacional-de-pacientes-con-porfiria\/"},"modified":"2018-05-18T06:48:57","modified_gmt":"2018-05-18T06:48:57","slug":"feder-se-une-al-dia-internacional-de-pacientes-con-porfiria","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/05\/18\/feder-se-une-al-dia-internacional-de-pacientes-con-porfiria\/","title":{"rendered":"FEDER se une al D\u00eda Internacional de Pacientes con Porfiria"},"content":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

El 18 de mayo se celebra el D\u00eda Internacional de Pacientes con Porfiria; por esta raz\u00f3n queremos expresar nuestro apoyo a todos los pacientes y familias que conviven con esta patolog\u00eda y reconocer su lucha para promover un mayor reconocimiento de esta enfermedad rara.<\/span><\/p>\n

En este d\u00eda, asociaciones de pacientes de todo el mundo realizan diferentes actividades divulgativas para sensibilizar y concienciar sobre esta enfermedad que, debido a que presenta s\u00edntomas comunes o inespec\u00edficos, muchas veces presenta retraso en su diagn\u00f3stico que puede empeorar la situaci\u00f3n del paciente.<\/p>\n

Las porfirias son un grupo heterog\u00e9neo de enfermedades metab\u00f3licas caracterizadas por una alteraci\u00f3n gen\u00e9tica y hereditaria (excepto la porfiria cut\u00e1nea tard\u00eda) de las enzimas que intervienen en la s\u00edntesis del grupo hemo (componente de la hemoglobina encargada del transporte del ox\u00edgeno en la sangre). Como consecuencia de esta alteraci\u00f3n las enzimas se sintetizan en cantidades deficientes, tanto por el h\u00edgado (porfirias hep\u00e1ticas) como por la m\u00e9dula \u00f3sea (porfirias eritropoy\u00e9ticas).<\/p>\n

En este d\u00eda, queremos resaltar la labor que diferentes asociaciones de pacientes realizan en pro de generar una concienciaci\u00f3n global en torno a esta enfermedad y los desaf\u00edos que d\u00eda a d\u00eda enfrentan los pacientes y sus familias. Adem\u00e1s resaltamos, la labor que realizan para informar a las familias y los pacientes, dar a conocer las l\u00edneas de investigaci\u00f3n que se desarrollan a nivel nacional e internacional y sobre todo trabajar d\u00eda a d\u00eda con fuerza por mejorar la calidad de vida de los pacientes.<\/p>\n

Reconocemos la labor de la Asociaci\u00f3n Espa\u00f1ola de Porfiria, la <\/span>Asociaci\u00f3n contra las Enfermedades Neuromusculares en Cantabria,  la Asociaci\u00f3n de Enfermos Neuromusculares de Castilla La Mancha, la Asociaci\u00f3n Espa\u00f1ola contra Las Enfermedades Neuromusculares- Asturias,  la Asociaci\u00f3n Espa\u00f1ola contra las Enfermedades Neuromusculares- Madrid, la  Asociaci\u00f3n Espa\u00f1ola contra las Enfermedades Neuromusculares- Andaluc\u00eda Oriental, la Asociaci\u00f3n Espa\u00f1ola contra las Enfermedades Neuromusculares- Andaluc\u00eda Occidental, la  Asociaci\u00f3n Espa\u00f1ola contra las Enfermedades Neuromusculares- Galicia,  Asociaci\u00f3n Espa\u00f1ola contra las Enfermedades Neuromusculares (Castilla-Le\u00f3n), la Federaci\u00f3n Espa\u00f1ola de Enfermedades Neuromusculares y la  Asociaci\u00f3n de Discapacitados y Enfermedades Raras de IBI<\/p>\n

\u00daltima actualizaci\u00f3n: 18 de mayo de 2018.<\/p>\n<\/p>\n

 <\/p>\n

 <\/p>\n

Fuente: FEDER FEDER se une al D\u00eda Internacional de Pacientes con Porfiria<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 18 de mayo se celebra el D\u00eda Internacional de Pacientes con Porfiria; por esta raz\u00f3n queremos expresar nuestro apoyo a todos los pacientes y familias que conviven con esta patolog\u00eda y reconocer su lucha para promover un mayor reconocimiento de esta enfermedad […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3739","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nFEDER se une al D\u00eda Internacional de Pacientes con Porfiria - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2018\/05\/18\/feder-se-une-al-dia-internacional-de-pacientes-con-porfiria\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER se une al D\u00eda Internacional de Pacientes con Porfiria - 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