{"id":4410,"date":"2019-11-05T07:56:01","date_gmt":"2019-11-05T07:56:01","guid":{"rendered":"https:\/\/asfema.org\/blog\/?p=4410"},"modified":"2023-02-12T13:20:10","modified_gmt":"2023-02-12T13:20:10","slug":"xxxiiia-conferencia-espku-izmir-turquia","status":"publish","type":"post","link":"https:\/\/asfema.org\/blog\/index.php\/xxxiiia-conferencia-espku-izmir-turquia\/","title":{"rendered":"XXXIII\u00aa Conferencia ESPKU, Izmir, Turqu\u00eda"},"content":{"rendered":"<p>El pasado fin de semana 31 de octubre hasta 3 de noviembre tuvo lugar la XXXIII\u00aa Conferencia ESPKU. El anfitri\u00f3n de este a\u00f1o, Turqu\u00eda, nos llev\u00f3 a la localidad playera de Izmir, al oeste del pa\u00eds, donde durante 2 d\u00edas de conferencia (y sus 4 noches) asistimos a unas jornadas intensivas sobre la fenilcetonuria y compartimos experiencias con nuestras amistades. Ha sido un viaje largo, dicen que algunos han perdido sus pasaportes en aeropuertos ex\u00f3ticos, alguien ha perdido su vuelo, a alg\u00fan avi\u00f3n le di\u00f3 un rel\u00e1mpago&#8230; Pero todos llegamos sanos y salvos.<\/p>\n<p>De parte de ASFEMA\/ FEEMH ha ido Agata, en calidad de delegada a la ESPKU. De parte de AVA PKU han ido Sergio y Sara:<\/p>\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/B4U9Etxn3dN\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"12\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:500px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\">\n<div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4U9Etxn3dN\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\"> <\/p>\n<div style=\" display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\">\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div>\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div>\n<\/div>\n<\/div>\n<div style=\"padding: 19% 0;\"><\/div>\n<div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewBox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div>\n<div style=\"padding-top: 8px;\">\n<div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\"> View this post on Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div>\n<\/div>\n<div style=\"margin-left: auto;\">\n<div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div>\n<div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div>\n<\/div>\n<\/div>\n<p><\/a> <\/p>\n<p style=\" margin:8px 0 0 0; padding:0 4px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4U9Etxn3dN\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#000; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none; word-wrap:break-word;\" target=\"_blank\">Representaci\u00f3n de @avapku en #espku2019<\/a><\/p>\n<p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\">A post shared by <a href=\"https:\/\/www.instagram.com\/piensa.en.metabolico\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px;\" target=\"_blank\"> FEEMH<\/a> (@piensa.en.metabolico) on <time style=\" font-family:Arial,sans-serif; font-size:14px; line-height:17px;\" datetime=\"2019-11-01T15:12:48+00:00\">Nov 1, 2019 at 8:12am PDT<\/time><\/p>\n<\/div>\n<\/blockquote>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n<h2>El programa<\/h2>\n<p>EL programa com\u00fan ha sido\u00a0 muy bien preparado, con repaso de las terapias aprobadas para la PKU (la dieta, Kuvan y pegvaliasa &#8211; palynziq) sus ventajas y sus problemas.<\/p>\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/B4USLhMHV2W\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"12\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:500px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\">\n<div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4USLhMHV2W\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\"> <\/p>\n<div style=\" display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\">\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div>\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div>\n<\/div>\n<\/div>\n<div style=\"padding: 19% 0;\"><\/div>\n<div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewBox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div>\n<div style=\"padding-top: 8px;\">\n<div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\"> View this post on Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div>\n<\/div>\n<div style=\"margin-left: auto;\">\n<div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div>\n<div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div>\n<\/div>\n<\/div>\n<p><\/a> <\/p>\n<p style=\" margin:8px 0 0 0; padding:0 4px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4USLhMHV2W\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#000; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none; word-wrap:break-word;\" target=\"_blank\">Francjan von Spronsen sobre las ventajas y costes del uso de #sapropterina en #pku #espku2019<\/a><\/p>\n<p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\">A post shared by <a href=\"https:\/\/www.instagram.com\/piensa.en.metabolico\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px;\" target=\"_blank\"> FEEMH<\/a> (@piensa.en.metabolico) on <time style=\" font-family:Arial,sans-serif; font-size:14px; line-height:17px;\" datetime=\"2019-11-01T08:57:59+00:00\">Nov 1, 2019 at 1:57am PDT<\/time><\/p>\n<\/div>\n<\/blockquote>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n<p>&nbsp;<\/p>\n<p>Tambi\u00e9n se habl\u00f3 mucho de problemas sociales: Reeshad Noori, refugiado de origen afgano en Turqu\u00eda cont\u00f3 las peripecias de su familia, con un sobrino con PKU, para obtener permiso de residencia y acceso el tratamiento necesario en Europa. Por su parte, Zynep Taydas record\u00f3 los derechos del paciente seg\u00fan lo acordado por Naciones Unidas.<\/p>\n<p>EL viernes pertenec\u00eda a los investigadores de Gr\u00f6ningen que subieron a escenario para explicar cu\u00e1nto se lleva a cabo en aquel centro de excelencia. Destacamos dos ponencias en las que los pacientes espa\u00f1oles tuvieron su participaci\u00f3n, pues tambi\u00e9n contribu\u00edmos al estudio.<\/p>\n<p>Por un lado la doctoranda Els van der Goot coment\u00f3 algunos primeros hallazgos en estudio <a href=\"https:\/\/metabolicos.es\/2019\/02\/estudio-sobre-habitos-de-sueno-en-personas-con-pku\/\">sobre el sue\u00f1o.\u00a0<\/a><\/p>\n<p>Puesto que se trata de un primer estudio, es dif\u00edcil dar alguna respuesta pero el campo parece digno de una investigaci\u00f3n posterior. Bas\u00e1ndose solo en los cuestionarios (esto es, sin medir la actividad neurotrasmisora etc.) se concluy\u00f3 que puede haber una mayor dificultad a la hora de dormirse, y cierta tendencia a parasomnias.<\/p>\n<p>ELs van der Goot ha sido invitada a publicar sus conclusiones en en pr\u00f3ximo n\u00famero de<a href=\"https:\/\/metabolicos.es\/revista-de-la-federacion-espanola-de-enfermedades-metabolicas-hereditarias\/\">\u00a0la revista ,\u00a0<\/a>as\u00ed que esperamos poder informaros con m\u00e1s detalles.<br \/>\nPor otra parte, la dra. Heiner coment\u00f3 sus hallazgos en el estudio de contenido de aspartamo en refrescos de diversos pa\u00edses (la Federaci\u00f3n tambi\u00e9n mand\u00f3 muestras). El contenido de aspartamo en estos productos difiere de un pa\u00eds a otro. En cuanto sea posible, vamos a publicarlos.<\/p>\n<p>&nbsp;<\/p>\n<h3>Novedades terap\u00e9uticas para la PKU<\/h3>\n<p>Un momento especial en el programa se merece un amplio espacio otorgado a la innovaci\u00f3n. Por primera vez, diversas marcas han explicado a los pacientes las terapias innovadoras que est\u00e1n llevando a cabo. Desde terapia con c\u00e9lulas rojas o bacterias intestinales, pasando por diversos tipos de terapias de sustituci\u00f3n enzim\u00e1tica, hasta intervenci\u00f3n en el genoma. Todas las ponencias han sido extraordinariamente interesantes.\u00a0<strong>Todas ellas &#8211;\u00a0<\/strong>en ello hay que insistir &#8211;\u00a0<strong>se encuentran ahora bien en fase precl\u00ednica, bien en fase de ensayos cl\u00ednicos. Esto significa que no est\u00e1n aprobadas y que no sabemos si se aprobar\u00e1n.\u00a0<\/strong>Pero a\u00fan as\u00ed es esperanzador ver cu\u00e1nto se mueve en la investigaci\u00f3n.<\/p>\n<p>Cuadro resumen de las terapias investigadas:<\/p>\n<div id='gallery-1' class='gallery galleryid-4410 gallery-columns-3 gallery-size-large'><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/asfema.org\/blog\/index.php\/xxxiiia-conferencia-espku-izmir-turquia\/whatsapp-image-2019-11-05-at-08-22-25\/'><img width=\"1200\" height=\"675\" src=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.25-1200x675.jpeg\" class=\"attachment-large size-large\" alt=\"\" decoding=\"async\" loading=\"lazy\" srcset=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.25-1200x675.jpeg 1200w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.25-850x478.jpeg 850w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.25-250x141.jpeg 250w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.25-800x450.jpeg 800w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/a>\n\t\t\t<\/div><\/figure><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/asfema.org\/blog\/index.php\/xxxiiia-conferencia-espku-izmir-turquia\/whatsapp-image-2019-11-05-at-08-22-251\/'><img width=\"1200\" height=\"675\" src=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.251-1200x675.jpeg\" class=\"attachment-large size-large\" alt=\"\" decoding=\"async\" loading=\"lazy\" srcset=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.251-1200x675.jpeg 1200w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.251-850x478.jpeg 850w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.251-250x141.jpeg 250w, https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/WhatsApp-Image-2019-11-05-at-08.22.251-800x450.jpeg 800w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/a>\n\t\t\t<\/div><\/figure>\n\t\t<\/div>\n\n<p>Es de agradecer tambi\u00e9n la presencia de dos fabricantes de prototipos de medidores caseros de fenilalanina. Aptatek, designado por FDA (estados unidos) con la menci\u00f3n de\u00a0<em>breakthrough device\u00a0<\/em>, lo cual le permite avanzar por v\u00eda r\u00e1pida, esperemos que hacia una pronta comercializaci\u00f3n, y Igoo, desarrollado en Europa en apoyo de diversos pa\u00edses. Esperemos que pronto sean realidad.<\/p>\n<div id=\"fb-root\"><\/div>\n<p><script async=\"1\" defer=\"1\" crossorigin=\"anonymous\" src=\"https:\/\/connect.facebook.net\/es_ES\/sdk.js#xfbml=1&amp;version=v5.0\"><\/script><\/p>\n<div class=\"fb-video\" data-href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/videos\/2898671706829410\/\" data-width=\"500\">\n<blockquote cite=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/videos\/2898671706829410\/\" class=\"fb-xfbml-parse-ignore\"><p><a href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/videos\/2898671706829410\/\"><\/a><\/p>\n<p>Dos presentaciones muy interesantes de prototipos de monitores de fenilalanina Apotrk y Egoo en la #espku2019<\/p>\n<p>Publicada por <a href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/\">Asfema<\/a> en S\u00e1bado, 2 de noviembre de 2019<\/p><\/blockquote>\n<\/div>\n<p>&nbsp;<\/p>\n<h2>Programa de delegados<\/h2>\n<p><a href=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/74707189_1004497499900340_2070563919054766080_n.jpg\"><img decoding=\"async\" loading=\"lazy\" class=\"alignleft wp-image-4415 size-thumbnail\" src=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/74707189_1004497499900340_2070563919054766080_n-250x141.jpg\" alt=\"\" width=\"250\" height=\"141\" \/><\/a><\/p>\n<p>En el programa de delegados nos centramos en hacernos visibles a nivel europeo. Acordamos lanzamiento de un manifiesto y finalizamos nuestro comunicado sobre la transici\u00f3n de adultos que ya pod\u00e9is consultar <a href=\"https:\/\/www.espku.org\/2019\/11\/05\/treatment-for-adult-metabolic-patients-is-insufficient\/\">en ingl\u00e9s ,\u00a0<\/a><\/p>\n<p>Hablamos mucho de nuestra presencia en las instituciones &#8211; y sobre la que ya sab\u00e9is un poco.<\/p>\n<p>Este a\u00f1o ingres\u00f3 en la E.S.PKU la asociaci\u00f3n palestina de West Bank (Bel\u00e9n) y hablamos de problemas que atraviesan diversos pa\u00edses en el acceso al tratamiento.<\/p>\n<p>Participamos tambi\u00e9n en talleres sobre regulaci\u00f3n europea de etiquetado de productos, cuestion de la que\u00a0<em>siempre\u00a0<\/em>tenemos que estar pendientes, y reflexionamos sobre c\u00f3mo implementar nuestros concimientos de Health Technology Assessment en beneficio de nuestra comunidad.<\/p>\n<p>&nbsp;<\/p>\n<h2>Sheila Jones<\/h2>\n<p><a href=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/75627478_2426117710970136_1099727252314128384_n.jpg\"><img decoding=\"async\" loading=\"lazy\" class=\"alignright wp-image-4414 size-thumbnail\" src=\"https:\/\/asfema.org\/blog\/wp-content\/uploads\/2019\/11\/75627478_2426117710970136_1099727252314128384_n-250x141.jpg\" alt=\"\" width=\"250\" height=\"141\" \/><\/a>El premio Sheila Jones se otorga a los activistas por la PKU. El nombre honra a la familia Jones cuya persistencia hizo que se descubriera el tratamiento para la fenilcetonuria. Este a\u00f1o, fue galadronada otra &#8220;madre de Sheila&#8221;:\u00a0Seng\u00fcl Kocat\u00fcrk, que subi\u00f3 al escenario con su hijo PKU de diagn\u00f3stico tard\u00edo. Fue ella la que cruz\u00f3 de Turqu\u00eda a Dinamarca en busca de tratamiento para su hijo y que luch\u00f3 firmemente por el acceso al tratamiento para \u00e9l y para su pa\u00eds.<\/p>\n<p>En breve publicaremos una nota biogr\u00e1fica de la galadronada.<\/p>\n<h2>Comida, ocio y diversi\u00f3n<\/h2>\n<p>Una de las razones por la que el congreso es una experiencia \u00fanica es la comida ex\u00f3tica que se puede comer en \u00e9l. Turqu\u00eda apost\u00f3 por sabores locales, con un mont\u00f3n de verdura ali\u00f1ada al estilo oriental.<\/p>\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/B4UhMPlnEOZ\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"12\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:500px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\">\n<div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4UhMPlnEOZ\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\"> <\/p>\n<div style=\" display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\">\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div>\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div>\n<\/div>\n<\/div>\n<div style=\"padding: 19% 0;\"><\/div>\n<div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewBox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div>\n<div style=\"padding-top: 8px;\">\n<div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\"> View this post on Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div>\n<\/div>\n<div style=\"margin-left: auto;\">\n<div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div>\n<div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div>\n<\/div>\n<\/div>\n<p><\/a> <\/p>\n<p style=\" margin:8px 0 0 0; padding:0 4px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4UhMPlnEOZ\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#000; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none; word-wrap:break-word;\" target=\"_blank\">Buffet #bajoenproteina #lowprotein en #espku2019<\/a><\/p>\n<p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\">A post shared by <a href=\"https:\/\/www.instagram.com\/piensa.en.metabolico\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px;\" target=\"_blank\"> FEEMH<\/a> (@piensa.en.metabolico) on <time style=\" font-family:Arial,sans-serif; font-size:14px; line-height:17px;\" datetime=\"2019-11-01T11:10:34+00:00\">Nov 1, 2019 at 4:10am PDT<\/time><\/p>\n<\/div>\n<\/blockquote>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n<p>La ESPKU es una oportunidad de hacer exposici\u00f3n de productos bajos en prote\u00edna de diversos fabricantes. Este a\u00f1o tampoco pudo faltar:<\/p>\n<blockquote class=\"instagram-media\" data-instgrm-captioned data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/B4Wu54lnSmr\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"12\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:500px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\">\n<div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4Wu54lnSmr\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\"> <\/p>\n<div style=\" display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\">\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div>\n<div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div>\n<\/div>\n<\/div>\n<div style=\"padding: 19% 0;\"><\/div>\n<div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewBox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div>\n<div style=\"padding-top: 8px;\">\n<div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\"> View this post on Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div>\n<div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div>\n<\/div>\n<div style=\"margin-left: auto;\">\n<div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div>\n<div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div>\n<div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div>\n<\/div>\n<\/div>\n<p><\/a> <\/p>\n<p style=\" margin:8px 0 0 0; padding:0 4px;\"> <a href=\"https:\/\/www.instagram.com\/p\/B4Wu54lnSmr\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#000; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none; word-wrap:break-word;\" target=\"_blank\">Exposici\u00f3n de comida y f\u00f3rmula en la #espku2019  #piensaenmetabolico<\/a><\/p>\n<p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\">A post shared by <a href=\"https:\/\/www.instagram.com\/piensa.en.metabolico\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px;\" target=\"_blank\"> FEEMH<\/a> (@piensa.en.metabolico) on <time style=\" font-family:Arial,sans-serif; font-size:14px; line-height:17px;\" datetime=\"2019-11-02T07:47:28+00:00\">Nov 2, 2019 at 12:47am PDT<\/time><\/p>\n<\/div>\n<\/blockquote>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n<p>Se nos hizo corta la cena de gala, con sus bailes y m\u00fasica tradicionales; tan corta que algunos no dormimos a la espera del avi\u00f3n que sal\u00eda a horas inhumanas para conectar la lejana Izmir con nuestro destino. En la ESPKU ya tenemos unas amistades de por vida y una sensaci\u00f3n de estar en familia.<\/p>\n<h2>La pr\u00f3xima E.S.PKU en Espa\u00f1a<\/h2>\n<p>Ya es oficial, en el momento de clausura del congreso recogimos el testigo.<\/p>\n<div id=\"fb-root\"><\/div>\n<p><script async=\"1\" defer=\"1\" crossorigin=\"anonymous\" src=\"https:\/\/connect.facebook.net\/es_ES\/sdk.js#xfbml=1&amp;version=v5.0\"><\/script><\/p>\n<div class=\"fb-post\" data-href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/photos\/rpp.393139184102649\/2567805879969291\/?type=3&amp;theater\" data-width=\"500\">\n<blockquote cite=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/photos\/a.726541777429053\/2567805879969291\/?type=3\" class=\"fb-xfbml-parse-ignore\">\n<p>Recogiendo el testigo de parte de la organziaci\u00f3n del congreso. El pr\u00f3ximo a\u00f1o daremos la bienvenida al congreso europeo en Madrid &#8211; coordinado a nivel nacional desde Federaci\u00f3n Metab\u00f3licos<\/p>\n<p>Publicada por <a href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/\">Asfema<\/a> en&nbsp;<a href=\"https:\/\/www.facebook.com\/AsfemaMetabolicos\/photos\/a.726541777429053\/2567805879969291\/?type=3\">S\u00e1bado, 2 de noviembre de 2019<\/a><\/p><\/blockquote>\n<\/div>\n<p>El pr\u00f3ximo congreso de la E.S.PKU ser\u00e1 en Madrid, lo organizar\u00e1 la<a href=\"http:\/\/metabolicos.es\"> Federaci\u00f3n\u00a0\u00a0<\/a>y las asociaciones, entre otras, ASFEMA. Empezamos ya, porque hay muchas cosas que organizar.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Si est\u00e1s interesado en saber en detalle lo que pas\u00f3 en Izmir, este a\u00f1o vamos a organizar una reuni\u00f3n informativa.\u00a0<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El pasado fin de semana 31 de octubre hasta 3 de noviembre tuvo lugar la XXXIII\u00aa Conferencia ESPKU. El anfitri\u00f3n de este a\u00f1o, Turqu\u00eda, nos llev\u00f3 a la localidad playera de Izmir, al oeste del pa\u00eds, donde durante 2 d\u00edas de conferencia (y sus 4 noches) asistimos a unas jornadas intensivas sobre la fenilcetonuria y &hellip;<\/p>\n<p class=\"read-more\"> <a class=\"\" href=\"https:\/\/asfema.org\/blog\/index.php\/xxxiiia-conferencia-espku-izmir-turquia\/\"> <span class=\"screen-reader-text\">XXXIII\u00aa Conferencia ESPKU, Izmir, Turqu\u00eda<\/span> Read More &raquo;<\/a><\/p>\n","protected":false},"author":2,"featured_media":4416,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","footnotes":""},"categories":[31,332],"tags":[342,474,99,475,476],"acf":[],"_links":{"self":[{"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/posts\/4410"}],"collection":[{"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/comments?post=4410"}],"version-history":[{"count":1,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/posts\/4410\/revisions"}],"predecessor-version":[{"id":4417,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/posts\/4410\/revisions\/4417"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/media\/4416"}],"wp:attachment":[{"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/media?parent=4410"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/categories?post=4410"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/asfema.org\/blog\/index.php\/wp-json\/wp\/v2\/tags?post=4410"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}