tag:blogger.com,1999:blog-68544583187854308002024-02-06T18:08:30.608-08:00ASOC. DE ENFERMEDADES RARAS DE ALCALÁ DE HENARES (ADERAH)ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-6854458318785430800.post-42898156002512477622016-07-26T11:54:00.002-07:002016-07-26T11:54:27.458-07:00LA CAIXA COLABORA CON ADERAH<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7c7ircOG-5hwM5nCYBr3vDRudF0Gm5n7Pc5b5Sbjnlh6lDwXuq_yEbkApZo02SBsR1hxYoyclg37JKEvWFLmeDZ2vkqQV5a1dWhaB1JyOls3WA7jRqCAXjf1VzxpELc4urohbVir3bG8y/s1600/FOTOS+DE+ENTREGA+DEL+CHEQUE+DE+LA++CAIXA.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;">La Obra Social de la Caixa colabora con la Asociación de Enfermedads Raral de Alcalá de Henares ADERAH</a></div>
<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-79848972078961534822016-07-26T11:29:00.002-07:002016-07-26T11:36:48.896-07:00ENTREVISTA DEL ABC A MARINA Y SU MAMÁ DÍA 16 DE JULIO DE 1016<div class="separator" style="clear: both; text-align: center;">
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El día 16 de Julio de 2016 el periódico ABC realizó una entrevista a Marina con su mamá para hablar de la Displasia Ectodérmica, enfermedad que padece Marina y que apesar de que no le ayuda mucho la Administración, ella continúa salvando todas las dificultades y formándose gracias al buen hacer de sus padres. un hecho que llama la atención en la entrevista es que la valoración que tenía Marina de grado de minusvalía del 38% se lo bajaron al 27% de la noche a la mañana se lo modificaron sin saber porqué. <br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-85930880085717189782016-04-01T11:33:00.001-07:002016-04-07T04:34:05.369-07:00 MESA SOLIDARIA EN LA DEHESA ALCAMPO DE ALCALÁ DE HENARES, DICIEMBRE DE 2015, ORGANIZA: SEREM (servicio de emergencia)<div class="separator" style="clear: both; text-align: center;">
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MESA SOLIDARIA EN LA DEHESA ALCAMPO DE ALCALÁ DE HENARES<br />
ORGANIZA: SEREM (servicio de emenrgencia)ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-43294278309781062312016-04-01T11:21:00.002-07:002016-04-01T11:46:38.082-07:00I CERTAMEN DE BANDAS EN FEBRERO DE 2016, ORGANIZADO POR AMC, LA COLUMNA, EN FAVOR DE ADERAH<div class="separator" style="clear: both; text-align: center;">
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I Certamen de Bandas de AMC en favor de ADERAH, Organizado por la Asociación Cultural La Columna de Alcalá de Henares.ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-62100108274046601462016-03-31T09:17:00.001-07:002016-04-01T11:52:41.571-07:00CONCIERTO DISNEY EN FAVOR DE APHISA, DÍA 10 DE ENERO DE 2016<div class="separator" style="clear: both; text-align: center;">
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Gran Concierto Disney organizado por: Artes Escénicas de Alcalá de Henares, ADERAH (ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENARES) con aforo completo, el público disfrutó a lo grande y sobretodo los niños/as<br />
Próximamente se repetirá el concierto en Margarita Sigur en Alcalá de Henares ya que se quedó mucho público sin poder entrar por estar completo el Auditorio.<br />
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ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-77433977026167102082015-12-01T03:41:00.001-08:002016-04-01T11:49:14.220-07:00<div class="separator" style="clear: both; text-align: center;">
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Concierto de "Disney" post Reyes Magos 2016, Para regalar a tus nin@s no os lo podéis perder.<br />
Día 10 de enero de 2016 a las 18 horas en el Auditorio Paco de Lucía, en Alcalá de Henares. (Madrid)ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-24084132997200508622015-11-18T02:53:00.001-08:002016-04-02T07:31:35.341-07:00La caixabank concede a ADERAH 1500€<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: lime;"><span style="font-size: x-large;">La Caixabank por medio su Obra Social concede 1.500€ a ADERAH</span></span></div>
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<span style="background-color: lime;"><span style="font-size: x-large;">oficina El Corrillo de Alcalá de Henares</span></span></div>
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<span style="background-color: lime;"><span style="font-size: x-large;">En la foto Marina afectada por Displasia Ectodérmica con su mamá Cristina de la Cruz. Hace entrega del cheque, el director de la entidad Alfonso Simón y una empleada llamada Mar</span></span></div>
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<span style="font-size: x-large;"><span style="background-color: lime;">noviembre de 2015</span></span></div>
<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-29353056903686709242015-04-15T12:39:00.002-07:002016-04-02T07:31:48.574-07:00APROBACIÓN DE LA DECLARACIÓN INSTITUCIONAL DE FEDER Y LAS ASOCIACIONES SOCIO-SANITARIAS EN LA PLAZA DE CERVANTES, 2015<div class="separator" style="clear: both; text-align: center;">
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Aprobada la propuesta de FEDER de la Declaración Institucional, que fue aprobada por todos los grupos políticos del Ayto. de Alcalá de Henares.<br />
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LAS ASOCICACIONES SOCIO-SANITARIAS EN LA PLAZA DE CERVANTES DE ALCALÁ DE HENARES, DÍA 10 DE ABRIL DE 2015 PROGRAMA DE LA CONCEJALÍA DEL AYTO. SEMANA DE LA SALUD. <br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-68064558247991788622015-03-08T03:24:00.001-07:002016-04-02T07:32:08.051-07:00EN EL SENADO CON LA REINA DOÑA LETIZIA, MARZO DE 2015, ACTO DE LAS ENFERMEDADES RARAS<div class="separator" style="clear: both; text-align: center;">
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Día5 de marzo conmemoración del día Mundial de las Enfermedades Raras (último día del mes de febrero, este año el 28) en el Senado, con la intervención de la Reina de España, Doña Letizia, el Ministro de Sanidad, el Presidente del Senado, El Presidente de FEDER y dos madres con hijos con enfermedades poco frecuentes conocidad como ER.<br />
Recibieron premios entidades y personas por su aportación en la ayuda a este colectivo de más de tres millones de personas con ER en nuestro País.<br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-59787088699971726652014-12-19T00:45:00.002-08:002015-03-12T12:14:27.593-07:00LOS DÍA 21, 22 Y 23 DE NOVIEMBRE V ENCUENTRO DE FAMILIAS DE AADELos día 21, 22 y 23 de noviembre las familias con enfermos de DE nos reunimos en Burgos en el centro CREER, como siempre fueron unas jornadas muy interesante donde padres y niños/as lo pasamos muy bien y hablamos de temas muy interesante que nos afectan a todos.<br />
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Gema Chicano y Mª José Delgado<br />
Presidenta y delegada de AADE<br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-75497515895809743172014-12-19T00:30:00.000-08:002014-12-19T00:51:35.565-08:00FELIZ NAVIDAD Y FELIZ AÑO NUEVO 2015<div class="separator" style="clear: both; text-align: center;">
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Participación en el Centro Comercial la Dehesa (Alcampo) con las mesas solidarias<br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-59563049826471565802014-06-12T01:36:00.000-07:002014-06-12T01:36:48.515-07:00ENTREVISTA A LAS FAMILAS, REFERIDOS AL DIAGNÓSTICO DE SUS ENFERMOS/AS<h3 style="text-align: center;">
<span style="background-color: #6aa84f;"> Entrevista a las familias sobre la investigación de la ER, se trata hoy del Envegecimiento Acelerado</span></h3>
En este vídeos podemos escuchar testimonios de las familias con hijos e hijas con enfermedades poco frecuentes, conocidas como enfermedades raras.<br />
Su diagnóstico, es fundamental tenerlo cuanto antes para poder poner remedio a estas terribles y desconocidas enfermedadess poco frecuentes, pero que ya afectan a más de tres millones de la población española, y hay más de 7.000 enfermedades reconocidas por la Organización Mundial de la Salud, todas ellas son enfermedades poco fecuentes llamadas raras por el desconocimiento de las mismas, pero que por desgracia cada día hay más o se conocen más.<br />
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En esta entrevista da su testimonio nuestra Presidenta Cristina de la Cruz<br />
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<a href="http://www.youtube.com/watch?v=CaglmT28nyI">http://www.youtube.com/watch?v=CaglmT28nyI</a><br />
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<br />ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-78063931460495800682013-09-28T09:20:00.003-07:002013-09-28T09:31:10.966-07:00VIENDO LAS ESTRELLAS, EL 14 DE JUNIO DE 2013<br />
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EL DÍA 14 DE JUNIO A iniciativa propuesta por la AGRUPACIÓN ASTRONÓMICA COMPLUTENSE de Alcalá de Henares hicimos esta estupenda actividad, donde acudieron mayores y niños a contemplar las estrellas en la que se pudo observar perfectamente los anillos de Saturnos.</v:imagedata></v:shape></v:shape></v:shape></v:path></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:f></v:formulas></v:stroke></v:shapetype></span></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;"><o:p> </o:p></span></div>
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<div class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 0pt; text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span style="color: red; font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;">Queridos amigos/as nuestra
actividad para el día 14 de junio (viernes) de 2013</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;">, <b style="mso-bidi-font-weight: normal;"><span style="color: red;">a partir de las 22horas estaremos en el Recinto
Ferial, puerta de entrada Plaza de la Juventud.</span></b><span style="color: red;"> </span>Se trata de mirar por el telescopio, y ver cosas en
el cielo, SI EL TIEMPO NOS LO PERMITE, de entrada vamos a mirar los cráteres de
la luna y los anillos de Saturno, montaremos tres telescopios y las personas
van pasando y mirando por el ocular, también intentaremos enseñarles algunas
estrellas, conocidas, ¿cómo encontrar la polar? etc.. y luego sobre la marcha dependiendo
del tiempo que haga, se pueden ver otras cosas,<o:p></o:p></span></div>
<br />
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;"><o:p> </o:p></span></div>
<br />
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;">ALGUNOS
DETALLES QUE ES INTERESANTE SABER:<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<strong><span style="color: red; font-family: "Arial","sans-serif"; font-size: 9pt;">Por qué la
Luna tiene tantos cráteres?</span></strong><span style="color: red; font-family: "Arial","sans-serif"; font-size: 9pt;"><o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">La Luna
es un museo, una colección de antiguos cráteres, algunos de los cuales miden
más de 150 km. de ancho. Durante siglos, los científicos se preguntaban su
origen. En tiempos de Galileo y hasta la década de 1890, se aceptaba que eran
respiraderos de enormes volcanes extintos. Ésta era una teoría razonable,
porque son muy similares a los volcanes de la Tierra: casi circulares y siempre
rodeados por escarpadas cordilleras montañosas.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">El
geólogo estadounidense Grove Karl Gilbert fue el primero en refutar tal teoría
al preguntarse por qué los cráteres de la Luna se encontraban al ras de suelo y
no en los picos de las montañas. En 1929 otro astrónomo estadounidense, Forest
Moulton, afirmó con fundamento que los meteoritos que chocaban con la Luna a
una velocidad de 108,000 km/h originaban cráteres circulares y formaban un
anillo montañoso a su alrededor.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">La
mayoría de esos cráteres se remontan a casi 4,000 millones de años. Antes de
esa época, la Luna se hallaba en constante crecimiento debido a que su gravedad
atraía los residuos que flotaban a su alrededor: rocas, polvo y asteroides.
Algunos de esos cuerpos tenían cientos de kilómetros de diámetro y dejaron
cráteres tan grandes que podemos observarlos desde la Tierra a simple vista.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">Cuando
el bombardeo aminoró, los elementos radiactivos de los residuos atraídos por la
Luna causaron grandes flujos de lava. Las rocas de la superficie se derritieron
y durante unos 500 millones de años la lava fluyó sobre la superficie de la
Luna, borrando algunos cráteres y formando enormes sombras oscuras conocidas
como mares, que son visibles hoy día.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">Hace
casi 3,000 millones de años cesó el flujo de lava. El choque de meteoros, en
fechas más recientes, creó una gran cantidad de cráteres nuevos, pero si los
astronautas hubieran llegado a la Luna en tiempos remotos, habrían encontrado
un panorama muy similar al actual.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">La Luna
no es la única que tiene marcas de esos impactos; las sondas espaciales
enviadas a otros planetas del Sistema Solar muestran huellas similares.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">La Luna
no tiene luz propia: lo que vemos como claro de luna es la luz que refleja del
Sol. Aunque algunas veces la luz de la Luna casi convierte una noche en día, el
poder de reflexión de las ondas luminosas es muy pobre. En comparación con un
campo nevado, que refleja casi el 100% de la luz que incide sobre su
superficie, la Luna refleja sólo un 7%, casi la misma cantidad que la roca
volcánica oscura.<o:p></o:p></span></div>
<br />
<div style="background: white; line-height: 12.75pt; text-align: justify;">
<span style="color: #5a5a5c; font-family: "Arial","sans-serif"; font-size: 9pt;">Sin
embargo, el 7% de la luz solar es impresionantemente brillante. En ocasiones,
cuando la Luna es visible durante el día, brilla lo suficiente para iluminar
una pequeña parte del cielo circundante. Cada vez que esto sucede, la Luna es
visible, aun cuando sea en fase creciente.<o:p></o:p></span></div>
<br />
<b><span style="color: #00bbff; font-size: 13.5pt;"><o:p><span style="font-size: small;"> </span></o:p></span></b><br />
<br />
<b><span style="color: #00bbff; font-size: 13.5pt;">Qué causa un anillo
alrededor de la Luna?</span></b><span style="color: #eeffff; font-size: 13.5pt;"><o:p></o:p></span><br />
<br />
<div style="tab-stops: 148.85pt;">
<b><span style="font-size: 13.5pt;">Los anillos
alrededor de la Luna son causados cuando la luz de la Luna pasa a través de
nubes delgadas de cristales de hielo en la atmósfera alta de la Tierra. A
medida que la luz de la Luna pasa a través de los cristales de hielo, ésta es
dividida de una manera similar a la luz cuando pasa a través de un lente. La
forma de los cristales de hielo causa que la luz de la Luna sea focalizada en
un anillo. Esto es similar a la manera en la que las gotas de agua en la
atmósfera más baja pueden dividir la luz solar para crear un arco iris.</span></b><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<br />
<b><span style="color: #00b050; font-size: 13.5pt;"><o:p><span style="font-size: small;"> </span></o:p></span></b><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<b><span style="color: #00b050; font-family: "Times New Roman","serif"; font-size: 13.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;">Cómo obtuvo Saturno sus anillos?</span></b><b><span style="color: #00b050; font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;"> </span></b><span style="color: #00b050; font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;"><o:p></o:p></span></div>
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<b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;">Los anillos
de Saturno probablemente se formaron cuando objetos tales como los cometas,
asteroides o incluso las lunas, se quebraron estando en órbita alrededor de
Saturno debido a la muy fuerte gravedad de éste. Las piezas de estos objetos se
mantuvieron juntas unas cerca de otras y se rompieron en piezas más pequeñas.
Estas piezas gradualmente se separaron alrededor de Saturno formando sus
anillos</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: ES;"><o:p></o:p></span></div>
<br />
<span style="font-size: 13.5pt;"><o:p><span style="font-size: small;"> </span></o:p></span><br />
<br />
<b><span style="font-size: 13.5pt;">La Luna no hace su propia luz. La luz que
vemos de la Luna es realmente la luz del Sol que está siendo reflejada desde la
superficie de la Luna.</span></b><span style="font-size: 13.5pt;"><o:p></o:p></span><br />
<br />
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<b style="mso-bidi-font-weight: normal;"><span style="color: red;"><span style="font-family: Calibri;">Esperamos que vengáis muchos la noche del viernes<span style="mso-spacerun: yes;"> </span>día 14 de junio, a partir de la 22 horas
estaremos en el Recinto Ferial , puerta Plaza de la Juventud.<o:p></o:p></span></span></b></div>
<br />
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050;"><span style="font-family: Calibri;">La actividad la ha preparado un compañero para ADERAH por
lo cual debemos de asistir todos los que podamos niños y mayores.<o:p></o:p></span></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;">
<b style="mso-bidi-font-weight: normal;"><span style="color: red;"><span style="font-family: Calibri;">Si es posible confirmar asistencia.<o:p></o:p></span></span></b></div>
ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com1tag:blogger.com,1999:blog-6854458318785430800.post-15613876487371987002013-03-10T11:15:00.005-07:002013-03-12T07:13:27.792-07:00ACTOS EN EL MES DE MARZO 2013<br />
<strong>
<span style="color: red;">DÍA 8 DE MARZO, ACTO EN CONMEMORACIÓN DEL DÍA MUNDIAL DE LA ENFERMEDADES RARA, ORGANIZADO POR FEDER</span></strong><br />
<strong><span style="color: red;"></span></strong><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;">
<span style="font-family: Calibri;">Hoy ha sido un gran día donde se ha puesto de manifiesto la
preocupación de la Princesa Letizia, también de las autoridades de este País
Con el Presidente del Senado y representación de todos los grupos de la cámara
Alta y también del mundo de deporte a través de Vicente del Bosque.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Los que más emocionaron es escuchar a las personas afectadas
que todas ellas poner toda la esperanza en que algún día se les atenderá como
merecen y sobretodo se hará la investigación que es lo más esencial de todo
porque hay que saber para poder poner el remedio a tanta desdicha.<o:p></o:p></span></div>
<a href="http://www.youtube.com/watch?v=v_-H8oZEGAM">http://www.youtube.com/watch?v=v_-H8oZEGAM</a><br />
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<a href="http://www.youtube.com/watch?v=SIRBWjQC3Og" id="yui_3_7_2_1_1362930116827_14826" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=SIRBWjQC3Og</a><br />
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<span id="yui_3_7_2_1_1363095207180_3562" style="font-family: "Verdana", "sans-serif"; font-size: 12pt;"><a href="http://www.youtube.com/watch?feature=player_embedded&v=Rywd8WRNMeM" id="yui_3_7_2_1_1363095207180_3561" rel="nofollow" target="_blank">http://www.youtube.com/watch?feature=player_embedded&v=Rywd8WRNMeM</a></span><br />
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<span style="color: #38761d;"> <strong>ALBA ANCOHECHEA, PSICÓLOGA DE FEDER</strong></span><br />
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<span style="color: red;">RUEDA DE PRENSA DÍA 4 DE MARZO DE 2013</span><br />
<span style="color: red;"></span><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;">
<span style="font-family: Calibri;">Hoy es un día muy especial para ADERAH y para todas las
asociaciones que trabajamos por las personas que tienen enfermedades poco
frecuentes, conocidas como enfermedades raras, son más de tres millones las
personas que están afectadas por ellas y para que no tengamos cada día más, hay
que investigarlas para dar con la diana del problema y poder poner tratamiento.</span></div>
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>Hoy lunes a las 13 horas en el Centro Municipal de Salud de la Calle Santiago en Alcalá de Henares, nos hablo el Presidente de AEFAF,
ellos luchan porque se investiguen la enfermedad que tiene su hijo y también la
tiene Sara de Alcalá por la que hemos llevado los tapones a multitud de sitios
y hemos colaborado en muchos eventos para que se recaudara lo máximo posible. Fue uan mañana lluviosa, pero los que estuvimos en la Rueda de prensa y después acompañando en la comida a Patxi lo pasamos muy bien porque vimos que nuestro esfuerzo, yla constacia de mucha gente y su generosidad, vale la pena.</span></div>
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<a href="http://www.youtube.com/watch?v=olKLsKrFI3I">http://www.youtube.com/watch?v=olKLsKrFI3I</a>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-84590290535538015652012-12-27T07:16:00.001-08:002013-01-09T03:51:06.062-08:00REYES MAGOS SOLIDARIOS, ORGANIZADO POR ADERAH Y ADAC<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Calibri;">La primera edición de los Reyes Solidarios parte de una
iniciativa de las asoc. ADAC y ADERAH en Alcalá de Henares. Agradecemos la
colaboración de entidades que lo han hecho posible, la Peña de los Vikingos,
Coca cola, la Obra Social La Caixa , Club yo Soy Padel, psicólogos Personaliza,
también agradecemos al Ayto. toda la ayuda de medios, Vestuario de los Reyes
Magos la Delegación de Distrito I y la Concejalía de Servicios Sociales y
Salud<span style="mso-spacerun: yes;"> </span>que nos facilitó el lugar y los
medios para la celebración.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Agradecemos a la Asoc. de Mª Auxiliadora y a la Asoc. de
Vecinos Tomás de Villanueva que son los que principalmente nos hicieron llegar
los nombres de los niños y niñas.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">También agradecemos a los voluntarios y voluntarias que
echaron una mano y a la Schola Cantorum por haber puesto la "guinga al
pastel" cantando una serie de villancicos que deleitó a mayores y niños.
Gracias a todos por haber hecho felices a más de 70 niños la noche de Reyes.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Todos comimos Roscón de Reyes y disfrutamos de una entrañable
tarde de Reyes.<o:p></o:p></span></div>
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Mª Luisa Macías Muñoz de Rivera</div>
Vicepresidenta de ADERAH<br />
<br />
Cristina de la Cruz Calleja<br />
Presidenta <br />
Asoc. de Enfermedades Raras de Alcalá de Henares<br />
Tlfs.Cristina 637784223 - Mª Luisa 606544306<br />
Blog: http://enfermerarasalcaladehenares.blogspot.com <br />
Correo: asocenfermedadesraras@yahoo.es<br />
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<a href="http://1.bp.blogspot.com/-WgeKLOqIrx0/UNxmBOPYhfI/AAAAAAAAAkM/wGgG3eijOeE/s1600/Cartel+Reyes+Solidarios+de+Juli%C3%A1n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-WgeKLOqIrx0/UNxmBOPYhfI/AAAAAAAAAkM/wGgG3eijOeE/s320/Cartel+Reyes+Solidarios+de+Juli%C3%A1n.jpg" width="226" /></a></div>
YA ESTAMOS PRÓXIMOS A LOS REYES MAGOS, QUE ESTE AÑO POR MEDIACIÓN DE ADERAH Y ADAC MUCHOS NIÑOS TENDRÁN REGALOS DE MANO DE LOS PROPIOS REYES MAGOS VENIDOS DE ORIENTE.ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-88543927071351118712012-12-27T05:11:00.004-08:002012-12-27T07:08:09.660-08:0012 GALA BENÉFICA DE CARLOS BARROSO<div class="separator" style="clear: both; text-align: center;">
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Concierto de Carlos Barroso, en favor de ADERAH y ADAC<br />
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<span id="yui_3_7_2_1_1356611386398_3594">para que disfrutéis de la Gala lo que no pudisteis estar en ella.</span></div>
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<span id="yui_3_7_2_1_1356611386398_3598">Un abrazo para todos y Feliz año 2013</span></div>
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ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-70924746721193175742012-12-17T10:05:00.004-08:002012-12-17T10:10:14.694-08:00ENCUENTRO DE ASOCIACIONES POR EL DÍA INTERNACIONAL DE LAS PERSONAS CON DISCAPACIDAD<div id="yui_3_7_2_1_1355760051022_26758">
ACTUACIÓN DE DANIEL MONTALVO (INVIDENTE) Y LUIS DE DIEGO Y QUE CANTAN ASÍ DE BIEN </div>
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ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-49983823260777922262012-12-17T08:45:00.002-08:002013-01-16T04:01:48.108-08:00ENLACES CON ENTIDADES DE INTERÉS<span style="background-color: #6aa84f; color: blue;">PERSONALIZA</span><br />
<a href="http://grupopersonaliza.es/personaliza-psicologos-en-alcala-de-henares-c-tinte-n%C2%BA-2-1%C2%BA">http://grupopersonaliza.es/personaliza-psicologos-en-alcala-de-henares-c-tinte-n%C2%BA-2-1%C2%BA</a><br />
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<a href="http://4.bp.blogspot.com/-KYDQ__JTf8I/UNGY0uqwRpI/AAAAAAAAAec/j73HMr2k0QU/s1600/Personaliza-Asociaciones.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="99" src="http://4.bp.blogspot.com/-KYDQ__JTf8I/UNGY0uqwRpI/AAAAAAAAAec/j73HMr2k0QU/s320/Personaliza-Asociaciones.png" width="320" /></a></div>
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<span style="background-color: #6aa84f; color: blue;">AYTO. DE ALCALÁ DE HENARES</span><br />
<a href="http://www.ayto-alcaladehenares.es/portalAlcala/principal1.jsp?codResi=1">http://www.ayto-alcaladehenares.es/portalAlcala/principal1.jsp?codResi=1</a><br />
<a href="http://4.bp.blogspot.com/-gcr6teyWUig/UNGY7MuxLFI/AAAAAAAAAe0/-iJFwXKsOpw/s1600/LOGO+DEL+AYTO.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-gcr6teyWUig/UNGY7MuxLFI/AAAAAAAAAe0/-iJFwXKsOpw/s320/LOGO+DEL+AYTO.jpg" width="320" /></a><br />
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<span style="background-color: #6aa84f; color: blue;">FEDERACIÓN ESPAÑOLA DE ENFERMEDADES RARA</span><br />
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<a href="http://www.enfermedades-raras.org/">http://www.enfermedades-raras.org/</a><br />
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<a class="l vst" href="http://www.google.es/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=1&cad=rja&ved=0CC8QFjAA&url=http%3A%2F%2Fwww.asociacionculturaladac.es.tl%2F&ei=v1DPUMquD8SXhQefhoHgCg&usg=AFQjCNECBytnD1PkHm_Jsdifvy4E8Gg6sA&sig2=IfN0U3zs1Ugr2gqY16NiCg" wrc-processed="done"><span style="background-color: #6aa84f; color: #1122cc;">Asociación Cultural y Juvenil ADAC Alcalá de Henares</span></a></h3>
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<a href="http://www.asociacionculturaladac.es.tl/">http://www.asociacionculturaladac.es.tl/</a><br />
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<span style="background-color: #6aa84f; color: black; font-size: x-large;"><strong>G&R</strong></span><br />
<a href="mailto:gutierrezvallejo@yahoo.es"><span style="background-color: #6aa84f; color: black; font-size: x-large;"><strong>gutierrezvallejo@yahoo.es</strong></span></a><br />
<a href="http://www.g-y-r-abogados.es/"><strong><span style="font-size: large;">http://www.g-y-r-abogados.es/</span></strong></a>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-67200101031065445762012-11-21T13:27:00.004-08:002012-12-27T07:56:58.450-08:00<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: lime; color: black; font-size: large;"><strong>Semana Solidaria en el C.C. La Dehesa Alcalá de Henares</strong></span></div>
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<a href="http://www.youtube.com/watch?v=P8Ngl7uUCJg">http://www.youtube.com/watch?v=P8Ngl7uUCJg</a><br />
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<a href="http://www.youtube.com/watch?v=xfTFfze2WO8">http://www.youtube.com/watch?v=xfTFfze2WO8</a> <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2NdG58CWSgiDpLCVnwBGdXeDUPPXrHHGCpB3Q0d0f6PGtf6uum-QaSIqcDPmMCb7zNVXumtiqlLyYs8GKR2-y-3891LvwhfDUOSm4OvAwmREqK5qhnTiGNFjfZqoSDpoblOWwT_eCtGiS/s1600/P1080532.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2NdG58CWSgiDpLCVnwBGdXeDUPPXrHHGCpB3Q0d0f6PGtf6uum-QaSIqcDPmMCb7zNVXumtiqlLyYs8GKR2-y-3891LvwhfDUOSm4OvAwmREqK5qhnTiGNFjfZqoSDpoblOWwT_eCtGiS/s320/P1080532.JPG" width="320" /></a></div>
<span style="color: blue;">Mª Luisa a tope son la asociación</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2n9WBi90hY4cQj87Kkchkb5p9hNV5PWqtKYfWQNSTeKlgwWilkn9RzuDvxt5ZSsCbFzJQf_Hco51oZRLQzaa0DulZ_FrxxphBZBqsHeUwo0ko2RXor_HW2JYcejU5OxosYvWVzbOXAZt/s1600/254983_365989880159937_1105933807_n%255B1%255D.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2n9WBi90hY4cQj87Kkchkb5p9hNV5PWqtKYfWQNSTeKlgwWilkn9RzuDvxt5ZSsCbFzJQf_Hco51oZRLQzaa0DulZ_FrxxphBZBqsHeUwo0ko2RXor_HW2JYcejU5OxosYvWVzbOXAZt/s320/254983_365989880159937_1105933807_n%255B1%255D.jpg" width="320" />La Asociación Cultulas Los Vikingos hacen entrega de un donativo a ADERAH</a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbm0bf8kvtdc145hMtVKocsH_d02pCe9MgEVdW1RYeXAmSx4FIvcP_1o3NJy8-oaUKlVAa9YHsuiG0hjdGiHP2E0bK6WYCKrWXqkgrB2xMWv_dGZ5j9RkkbhUFV5tsI7awPb1pxE9xv5qW/s1600/P1080678.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbm0bf8kvtdc145hMtVKocsH_d02pCe9MgEVdW1RYeXAmSx4FIvcP_1o3NJy8-oaUKlVAa9YHsuiG0hjdGiHP2E0bK6WYCKrWXqkgrB2xMWv_dGZ5j9RkkbhUFV5tsI7awPb1pxE9xv5qW/s320/P1080678.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbm0bf8kvtdc145hMtVKocsH_d02pCe9MgEVdW1RYeXAmSx4FIvcP_1o3NJy8-oaUKlVAa9YHsuiG0hjdGiHP2E0bK6WYCKrWXqkgrB2xMWv_dGZ5j9RkkbhUFV5tsI7awPb1pxE9xv5qW/s1600/P1080678.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: magenta;"></span></a></div>
<span style="color: magenta;">Marina y Elena con sus amiguitos del cole recaudan para la asociación</span> <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG4vGJfa-BDz4WzK7RjIpbL_oWX0ugs_Pyl5MtEx66KRU6ioG8UJKzkFGVTXc3QoAd6raw1H2Mzk7idwxpa5KAteH4copNM_OJquKGWo6fWuZ7JM78h2tesRJIfyV9IDORHNh5q_kdbAWf/s1600/P1080674.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG4vGJfa-BDz4WzK7RjIpbL_oWX0ugs_Pyl5MtEx66KRU6ioG8UJKzkFGVTXc3QoAd6raw1H2Mzk7idwxpa5KAteH4copNM_OJquKGWo6fWuZ7JM78h2tesRJIfyV9IDORHNh5q_kdbAWf/s320/P1080674.JPG" width="320" /><span style="color: purple;">Venta de suvenir a favor de ADERAH</span></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcZFUY2WUoE7TI10YO6cftTiYfcd3ewtxj81__cE3sbCr89rVFI035DmQFSYHPey36R65zbP14DQAfO1U7WW1RSNB4sToU3QFSTCJH-pM2RE9fnlu1Vr7CAzsPXNNPS4rPnmiaeDFd-4gc/s1600/P1080680.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcZFUY2WUoE7TI10YO6cftTiYfcd3ewtxj81__cE3sbCr89rVFI035DmQFSYHPey36R65zbP14DQAfO1U7WW1RSNB4sToU3QFSTCJH-pM2RE9fnlu1Vr7CAzsPXNNPS4rPnmiaeDFd-4gc/s320/P1080680.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYA0XacA5Sb3myd-_Pq0ak6m7749j7i8vvmzYCSCdW8KIjKnSEogLaktk7lFP2-ptbXu5RqEMDBFRSMzi6vLCEzzkdXuhPXHNci2W-2DNiipKIToULJY2N2QvlZ5o4JyLfDufQvxokZbDf/s1600/P1080681.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYA0XacA5Sb3myd-_Pq0ak6m7749j7i8vvmzYCSCdW8KIjKnSEogLaktk7lFP2-ptbXu5RqEMDBFRSMzi6vLCEzzkdXuhPXHNci2W-2DNiipKIToULJY2N2QvlZ5o4JyLfDufQvxokZbDf/s320/P1080681.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6i0RGRpx-sMLVyf-rwtrfcn-o29FUQlNNh6nMUCBeZQPMFSTTxAaR0rC8SCSmMtABzSZJZgd415dWbmk3zpgVxNLuGm_pf4nKdBYH6Id_KKRfjxzkwRcKssJbeCS5GovcPmhrptj-ueTf/s1600/P1080716.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6i0RGRpx-sMLVyf-rwtrfcn-o29FUQlNNh6nMUCBeZQPMFSTTxAaR0rC8SCSmMtABzSZJZgd415dWbmk3zpgVxNLuGm_pf4nKdBYH6Id_KKRfjxzkwRcKssJbeCS5GovcPmhrptj-ueTf/s320/P1080716.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3JTTR2UUVRKU1Yd38zAU3NKZOSHP9UFknuS_8StdX-4lXP6ULRiBAMucgxisYb0iTB20WG5wPH7-rc96DPYkPeWrkDxeSCusB-slo5RZrk_qIvmO-do2KLbgG4nchoN-dutVqJ-IBIu6v/s1600/P1080694.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3JTTR2UUVRKU1Yd38zAU3NKZOSHP9UFknuS_8StdX-4lXP6ULRiBAMucgxisYb0iTB20WG5wPH7-rc96DPYkPeWrkDxeSCusB-slo5RZrk_qIvmO-do2KLbgG4nchoN-dutVqJ-IBIu6v/s320/P1080694.JPG" width="320" /></a><span style="color: purple;">Los Vikingos hacen entrega del cheque solidarioa a la Presidenta de ADERAH Cristina de la Cuz</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDaWX9H90DGReKqtcHuE_S9jmZjyeH0IvkPCJDohJU0tUuCprSf-mMXVDTxei8A3aA_a-ZaGtX3JSBQs5g3Z4LxdHdYEIsQHISx6ul5u2PJhODDh558gc9AGphWfi3gobFjRko6jZn1MaN/s1600/P1080753.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: blue;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDaWX9H90DGReKqtcHuE_S9jmZjyeH0IvkPCJDohJU0tUuCprSf-mMXVDTxei8A3aA_a-ZaGtX3JSBQs5g3Z4LxdHdYEIsQHISx6ul5u2PJhODDh558gc9AGphWfi3gobFjRko6jZn1MaN/s320/P1080753.JPG" width="320" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDaWX9H90DGReKqtcHuE_S9jmZjyeH0IvkPCJDohJU0tUuCprSf-mMXVDTxei8A3aA_a-ZaGtX3JSBQs5g3Z4LxdHdYEIsQHISx6ul5u2PJhODDh558gc9AGphWfi3gobFjRko6jZn1MaN/s1600/P1080753.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: blue;">La Concejala del Ayto. visitó la Semana Solidaria</span></a><span style="color: blue;">Sara con su tita y su abuenla estuvieron en la mesa de ADERAH</span></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHNgfNN86nA45huVnhxChk80baITN2aLN4RWC7SUuf2A2tKfzQ1_AZQ0YXPoGMEbNvYgbqbfHyY6UopRnP5AE6CBC64QUJbHmevk_KM32C4E8t3FIVmOi73MhlM2eCwynmUW3xcV1rV26E/s1600/P1080769.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: blue;"><span style="color: purple;"> <span style="background-color: white;">Carlos Barroso con uno de los chicos de ADAC</span></span><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHNgfNN86nA45huVnhxChk80baITN2aLN4RWC7SUuf2A2tKfzQ1_AZQ0YXPoGMEbNvYgbqbfHyY6UopRnP5AE6CBC64QUJbHmevk_KM32C4E8t3FIVmOi73MhlM2eCwynmUW3xcV1rV26E/s320/P1080769.JPG" width="320" /></span></a><span style="background-color: white; color: purple;"> </span><br />
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<span style="color: purple;"> Carlos Barroso cantando en la Semana Solidaria y Alberto con él</span><br />
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<span style="color: purple;">Amparo y Mª José a tope con la Semana Solidaria</span><br />
<span style="color: purple;"> Los chicos de la Asoc. ADAC preparados para escuchar a Carlos Barroso</span><br />
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<span style="color: purple;">Jaime con Marina en el último día de la Semana Solidaria</span></div>
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<span style="background-color: #f3f3f3; color: blue;"> Los regalos para los Reyes Solidarios</span> <br />
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<span style="color: purple;"> Javier y Mónica Concejales del PSOe visitan la Semana Solidaria</span><br />
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<span style="color: blue;">Amparo y Mª José colaboraron a tope con la Asociación</span><br />
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<span style="color: purple;"> </span>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-2033725009144332982012-10-15T05:26:00.000-07:002012-12-27T07:03:36.901-08:00"REYES MAGOS SOLIDARIOS", PARA LOS NIÑOS Y NIÑAS DE ALCALÁ DE HENARES<div class="separator" style="clear: both; text-align: center;">
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt; line-height: 115%;"><span style="color: black;">Estimados
socios: <o:p></o:p></span></span></b></div>
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<span style="color: black;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;">Nuestro 1<sup>er</sup></span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt; mso-fareast-language: ES; mso-no-proof: yes;"> Aniversario como
Asociación, lo vamos a celebrar esta Navidad con un proyecto llamado “Reyes
Magos Solidarios”, esta idea <span style="mso-spacerun: yes;"> </span>surge para
hacer felices a los niños con pocos recursos económicos y necesitamos que
hagáis un esfuerzo y nos ayudéis económicamente a llegar al máximo posible de
niños. Cualquier aportación por pequeña que sea nos ayudará y será bienvenida.<o:p></o:p></span></b></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><o:p><span style="color: black;"> </span></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><span style="color: black;">Sabemos que son tiempos
duros para todos pero no queremos que ningún niño se quede esta Navidad sin
regalo, ayudadnos a que estos niños no pierdan su espíritu navideño ni su
ilusión, ellos forman parte de nuestro futuro.<o:p></o:p></span></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt; mso-fareast-language: ES; mso-no-proof: yes;"><o:p><span style="color: black;"> </span></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><span style="color: black;">El día 5 de Enero de 2013
a las 19:00h en <span style="mso-spacerun: yes;"> </span>el Centro Municipal de
Salud en la Calle Santiago nº13 de Alcalá de Henares, se hará el reparto de los
regalos y a la vez merendaremos Roscón de Reyes.<o:p></o:p></span></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><o:p><span style="color: black;"> </span></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><span style="color: black;">Para aquellos que podáis
aportar os recordamos que nuestro nº de Cta. La Caixa 2100 5329 16 0200097817
(Concepto: Reyes Magos Solidarios).<o:p></o:p></span></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><o:p><span style="color: black;"> </span></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><span style="color: black;">Gracias por vuestra
colaboración.<o:p></o:p></span></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Batang","serif"; font-size: 14pt;"><span style="color: black;">ADERAH <o:p></o:p></span></span></b></div>
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ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com1tag:blogger.com,1999:blog-6854458318785430800.post-60538027386987190012012-03-28T00:03:00.000-07:002012-12-27T07:09:10.643-08:00VÍDEOS DEL FESTIVAL BENÉFICO POR SARA EL DÍA 18 DE MARZO DE 2012<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHJyb9JsIItTs4QGLk4u0TseNEBC6aL1-8M5aFtHs_Q-iVDqmZnfbcI-QT0ARamXqgUDldIMwDOQSfFQAZF8L8wIbClm_wVmpMYmdcdkZJeoLfsoGvtGLjwL1nZwSbEAR6J0o4HrycRWTp/s1600/Cartel+-+Festival+Ben%25C3%2583%25C2%25A9fico+a+favor+de+Sara.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5709421078222118994" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHJyb9JsIItTs4QGLk4u0TseNEBC6aL1-8M5aFtHs_Q-iVDqmZnfbcI-QT0ARamXqgUDldIMwDOQSfFQAZF8L8wIbClm_wVmpMYmdcdkZJeoLfsoGvtGLjwL1nZwSbEAR6J0o4HrycRWTp/s320/Cartel+-+Festival+Ben%25C3%2583%25C2%25A9fico+a+favor+de+Sara.jpg" style="float: right; height: 320px; margin: 0px 0px 10px 10px; width: 226px;" /></a><br />
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7 <a href="http://www.youtube.com/watch?v=FtNliZF-Kf4" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=FtNliZF-Kf4</a><br />
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8 <a href="http://www.youtube.com/watch?v=Ji6raCavuLE" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=Ji6raCavuLE</a><br />
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10 <a href="http://www.youtube.com/watch?v=H3mKCkqKHSA&feature=share" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=H3mKCkqKHSA&feature=share</a><br />
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11 <a href="http://www.youtube.com/watch?v=3mMOiCR4hQU&feature=youtu.be" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=3mMOiCR4hQU&feature=youtu.be</a>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-56948924880291290492011-11-21T04:05:00.000-08:002011-11-21T04:20:17.342-08:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiClWtCGOGSka3U9IQHx5pX9y59EHc8v4nPRHZH2b5o45o8TNymIITbIeVk1KrQYp9XOrVnQHG4wofAn9DgjcSbV8Ap7JUf7d8NrEeKgAoco_yR_VmVC0fFZT7VjlYwo53F7aRU1YhRTEit/s1600/logo+peque%25C3%25B1o.jpg"><span style="font-size:130%;"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 187px; FLOAT: right; HEIGHT: 174px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5677419517951659682" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiClWtCGOGSka3U9IQHx5pX9y59EHc8v4nPRHZH2b5o45o8TNymIITbIeVk1KrQYp9XOrVnQHG4wofAn9DgjcSbV8Ap7JUf7d8NrEeKgAoco_yR_VmVC0fFZT7VjlYwo53F7aRU1YhRTEit/s320/logo+peque%25C3%25B1o.jpg" /></span></a><span style="font-size:130%;"><br /></span><br /><br /><br /><div><span style="font-size:180%;color:#33cc00;"><strong>APORTAR UN € EN LA DECLARACIÓN DE TU RENTA.</strong></span></div><br /><br /><br /><br /><br /><div><span style="font-size:130%;">El aportar UN € DE LA DECLARACIÓN DE TU RENTA sería para que investiguen las enfermedades poco frecuente, hay 7.000, son muchas, pero siempre para todo tiene que haber un principio en las cosas, sobre todo hacer incaipé en hacer pruebas genéticas a las personas portadoras, dándoles facilidades para ello y abriéndole el camino y no que se estén "topando contra una pared" cada vez que quieren saber sobre sus problemas, que puede ser el problema de cualquier persona, porque esto nos puede pasar a todos.</span></div><br /><div><span style="font-size:130%;"></span></div><br /><div align="center"><span style="font-size:180%;color:#33cc00;"><strong>VIDEOS DE LA PRESENTACIÓN DE LA ASOCIACIÓN ADERAH</strong></span></div><br /><div><br /><a id="yui_3_2_0_1_13218775585316074" href="http://www.youtube.com/watch?v=Jui5a_MekX8" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=Jui5a_MekX8</a><br /><br /><a href="http://www.youtube.com/watch?v=Xx2_hF9qDGM" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=Xx2_hF9qDGM</a><br /><br /><a href="http://www.youtube.com/watch?v=uM_bgDjEomA" rel="nofollow" target="_blank">http://www.youtube.com/watch?v=uM_bgDjEomA</a><br /><br /></div>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-26222647303416140762011-10-26T11:32:00.000-07:002013-03-18T11:51:59.830-07:00DÍPTICO DE LA ASOC. DE ENFERMEDADES RARAS DE ALCALÁ DE HENARES (ADERAH)<a href="http://1.bp.blogspot.com/-4RTgdZQERK4/Tqkff5HaflI/AAAAAAAAAJM/A-NQ4Hv6qwQ/s1600/diptico%2Btrabajado%2BCON%2BDIANA%2BOK.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5668096238790803026" src="http://1.bp.blogspot.com/-4RTgdZQERK4/Tqkff5HaflI/AAAAAAAAAJM/A-NQ4Hv6qwQ/s320/diptico%2Btrabajado%2BCON%2BDIANA%2BOK.jpg" style="float: right; height: 320px; margin: 0px 0px 10px 10px; width: 308px;" /></a><br />
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<span style="font-size: x-large;">Todas las personas que quieran o puedan colaborar con nuestra asociación, bien haciéndose socios, (10€ anuales) o con aportación voluntaria, pueden hacer sus aportaciones en la cuenta </span><span style="font-size: x-large;">de la asociación </span><span style="font-size: x-large;">en:</span><br />
<span style="font-size: x-large;"> LA CAIXA: 2100 5329 16 0200097817 poniendo el nombre del socio/a (si es socio/a) y el concepto para el que hace el ingreso.</span><br />
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ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-19278880792337424262011-04-19T06:43:00.000-07:002011-04-21T15:29:32.283-07:00JUNTA DIRECTIVA DE LA ASOC. DE ENFERMEDADES RARAS DE ALCALÁ DE HENARES (ADERAH)<div align="left"><br /><a href="http://1.bp.blogspot.com/-Yz_pV8Ha29g/TbAgHD-CReI/AAAAAAAAAH0/IsKSHQbpfdY/s1600/nombre%2Bde%2Bla%2Bjunta%2Bdirectiva%2Bde%2Baderah.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5598009642518201826" border="0" alt="" src="http://1.bp.blogspot.com/-Yz_pV8Ha29g/TbAgHD-CReI/AAAAAAAAAH0/IsKSHQbpfdY/s320/nombre%2Bde%2Bla%2Bjunta%2Bdirectiva%2Bde%2Baderah.jpg" /></a></div><br /><br /><p align="center"><a href="http://1.bp.blogspot.com/-Yz_pV8Ha29g/TbAgHD-CReI/AAAAAAAAAH0/IsKSHQbpfdY/s1600/nombre%2Bde%2Bla%2Bjunta%2Bdirectiva%2Bde%2Baderah.jpg"></a></p>ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0tag:blogger.com,1999:blog-6854458318785430800.post-53870490095663579552011-02-13T09:00:00.000-08:002012-10-15T07:36:00.281-07:0028 DE FEBRERO DÍA DE LAS ENFERMEDADES RARAShttp://www.noticiasmedicas.es/medicina/noticias/1775/1/2200-personas-han-corrido-en-Madrid-por-las-Enfermedades-Raras-en-Madrid-/Page1.html<br />
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El Senado exige equidad en el trato, educación y empleo de las personas con enfermedades raras<br />
Servimedia (23/02/2011)<br />
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El Pleno del Senado ha aprobado por unanimidad una moción en la que insta al Gobierno a que garantice "la igualdad de trato" de las personas con enfermedades raras en toda España, en ámbitos como el abordaje de su problema, el acceso a la educación y el empleo, ya que según los afectados este trato es muy diferente dependiendo del lugar de residencia de cada persona. <br />
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Concretamente, la iniciativa, firmada por todos los grupos, pide al Ejecutivo que avance, trabajando con las comunidades autónomas, "en acciones que garanticen la igualdad de trato, la prevención de la enfermedad y la equidad en la asistencia social y sanitaria" en los derechos sociales básicos de estas personas: educación, empleo y vivienda, así como en sus tratamientos terapéuticos. <br />
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Y es que, según la Federación Española de Enfermedades Raras (Feder), el 76% de los aproximadamente tres millones de afectados en España por alguno de los 7.000 problemas de salud poco frecuentes detectados hasta la fecha ha sufrido alguna vez discriminación por su enfermedad. <br />
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El 30% de las familias con esta situación se han visto empobrecidas al tener que dedicar un 20% de sus ingresos al tratamiento de sus enfermos, asegura también Feder. <br />
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Por todo esto, el texto salido de la Cámara Alta pide además al Gobierno que fortalezca la colaboración estratégica entre los ámbitos asistencial e investigador de estas enfermedades, en el marco de la Estrategia de Salud en Enfermedades Raras del Sistema Nacional de Salud. <br />
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La aprobación de esta moción coincide con los actos de conmemoración del Día Mundial de las Enfermedades Raras, el próximo 28, pero que celebrará su acto oficial y principal el 3 de marzo, precisamente en el Senado.ASOCIACIÓN DE ENFERMEDADES RARAS DE ALCALÁ DE HENAREShttp://www.blogger.com/profile/01055291688989837826noreply@blogger.com0