{"id":2390,"date":"2024-02-29T12:47:17","date_gmt":"2024-02-29T11:47:17","guid":{"rendered":"https:\/\/site.educa.madrid.org\/ies.josesaramago.arganda\/?p=2390"},"modified":"2024-02-29T12:50:08","modified_gmt":"2024-02-29T11:50:08","slug":"mercadillo-solidario-con-motivo-del-dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/site.educa.madrid.org\/ies.josesaramago.arganda\/index.php\/2024\/02\/29\/mercadillo-solidario-con-motivo-del-dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"Mercadillo solidario con motivo del D\u00eda Mundial de las enfermedades raras."},"content":{"rendered":"\n
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Con motivo del D\u00eda Mundial de las enfermedades raras se ha realizado un mercadillo solidario en el IES Jos\u00e9 Saramago en colaboraci\u00f3n con la Asociaci\u00f3n Espa\u00f1ola del S\u00edndrome de Prader Willi con el fin de recaudar fondos para su Residencia Mil Diferencias.<\/p>\n\n\n\n

En esta residencia, \u00fanica en Espa\u00f1a y espec\u00edfica para personas con esta enfermedad rara, que abri\u00f3 sus puertas en septiembre del 2022, viven 10 personas de entre 20 y 40 a\u00f1os que han mejorado mucho su calidad de vida gracias a los cuidados que les aporta vivir en un entorno adaptado a sus necesidades.<\/p>\n\n\n\n

Debido a sus caracter\u00edsticas ( alteraci\u00f3n del hipot\u00e1lamo que les hace no tener sensaci\u00f3n de saciedad, por lo que les hace estar en una continua b\u00fasqueda de comida, poniendo a veces su vida en peligro, problemas graves de comportamiento, dificultades de aprendizaje y lenguaje, alteraciones del sue\u00f1o y otros muchos m\u00e1s) se hace muy dif\u00edcil la convivencia con ellos pues necesitan un control las 24 horas del d\u00eda.<\/p>\n\n\n\n

Sin embargo en esta residencia ellos est\u00e1n felices. Han encontrado un sitio donde les comprenden y controlan el entorno para que est\u00e9n m\u00e1s tranquilos.<\/p>\n\n\n\n

\u200bGracias a todos por vuestra ayuda para colaborar a mantener esta residencia abierta.<\/p>\n\n\n\n

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Con motivo del D\u00eda Mundial de las enfermedades raras se ha realizado un mercadillo solidario en el IES Jos\u00e9 Saramago en colaboraci\u00f3n con la Asociaci\u00f3n Espa\u00f1ola del S\u00edndrome de Prader 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motivo del D\u00eda Mundial de las enfermedades raras se ha realizado un mercadillo solidario en el IES Jos\u00e9 Saramago en colaboraci\u00f3n con la Asociaci\u00f3n Espa\u00f1ola del S\u00edndrome de Prader 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