{"id":2352,"date":"2021-02-22T16:50:01","date_gmt":"2021-02-22T16:50:01","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/02\/22\/sara-campana-nacional-de-feder\/"},"modified":"2026-03-03T11:33:48","modified_gmt":"2026-03-03T11:33:48","slug":"sara-campana-nacional-de-feder","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/02\/22\/sara-campana-nacional-de-feder\/","title":{"rendered":"Sara, nuestra chica madrile\u00f1a, en la campa\u00f1a nacional de FEDER"},"content":{"rendered":"
\n
\"cartel<\/span><\/span><\/span><\/div>\n
 <\/div>\n
Nuestra chica madrile\u00f1a, Sara<\/strong> (arriba a la derecha), encantada de aparecer con el escritor y presentador Christian G\u00e1lvez<\/strong>, la actriz Adriana Ugarte<\/strong> y nuestro compa\u00f1ero de otra asociaci\u00f3n, Daniel, de <\/span><\/span><\/span><\/p>\n
la Asociaci\u00f3n ASMD Espa\u00f1a,<\/span><\/div>\n

 en el cartel de la campa\u00f1a nacional del D\u00eda Mundial de las Enfermedades Raras 2021 (28 de febrero) <\/strong>de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras.<\/div>\n<\/div>\n

\n
Como algunos ya sab\u00e9is, nuestra asociaci\u00f3n agrupa a 32 ni\u00f1os y j\u00f3venes con ataxia telangiectasia en Espa\u00f1a.<\/div>\n<\/div>\n
\n
 <\/div>\n
La ataxia telangiectasia<\/strong> es una enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura y que provoca una discapacidad progresiva, inmunodeficiencia y una mayor posibilidad de tener algunos tipos de tumores. No tiene cura ni tratamiento.<\/div>\n<\/div>\n
\n
 <\/div>\n
Luchamos por su investigaci\u00f3n<\/strong> y por mejorar la calidad de vida de los afectados<\/strong>, como Sara, y sus familias.<\/div>\n
 <\/div>\n
Ahora m\u00e1s que nunca, hay que apoyar la investigaci\u00f3n de las enfermedades raras. FEDER resume la situaci\u00f3n con la pandemia en este art\u00edculo<\/a><\/strong>: \u00abLa doble vulnerabilidad de las personas con enfermedades raras pone en riesgo al colectivo en plena crisis sanitaria<\/strong>\u00ab.<\/div>\n
\n

Si quieres colaborar con nosotros, puedes donar<\/strong> por Bizum al 01274 o a trav\u00e9s de nuestras redes sociales (Facebook<\/a>, Instagram<\/a>). Pincha aqu\u00ed <\/a>si quieres conocer otras formas de colaborar<\/strong>.<\/h2>\n<\/div>\n<\/div>\n
Gracias FEDER<\/strong> por ser la voz de todo el colectivo de enfermedades raras. Y gracias<\/strong> a los que apoy\u00e1is a Aefat en nuestra lucha por encontrar una cura para la ataxia telangiectasia.<\/div>\n
\n
 <\/div>\n
\u00a1\u00a1GRACIAS SARA Y FAMILIA POR REPRESENTARNOS A TODOS !!<\/strong><\/span><\/div>\n
\"Sara<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"
\n
\"cartel<\/span><\/span><\/span><\/div>\n
 <\/div>\n
Nuestra chica madrile\u00f1a, Sara<\/strong> (arriba a la derecha), encantada de aparecer con el escritor y presentador Christian G\u00e1lvez<\/strong>, la actriz Adriana Ugarte<\/strong> y nuestro compa\u00f1ero de otra asociaci\u00f3n, Daniel, de <\/span><\/span><\/span><\/p>\n
la Asociaci\u00f3n ASMD Espa\u00f1a,<\/span><\/div>\n

 en el cartel de la campa\u00f1a nacional del D\u00eda Mundial de las Enfermedades Raras 2021 (28 de febrero) <\/strong>de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras.<\/div>\n<\/div>\n

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