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Asociación Iberoamericana de Artrogriposis Múltiple Congénita (Asoiberoamc)

Logo_asoiberoamc-1Este grupo ha sido creado el día 10 del mes de AGOSTO DE 2010, nació con el objetivo de publicar y compartir información VERAZ acerca de la Artrogriposis múltiple congénita, esto ya que el término Artrogriposis define a un grupo de afecciones relativamente raras, y desafortunadamente son muy pocos los médicos, especialistas y demás integrantes del sector salud, que poseen conocimientos e información acertada sobre esta enfermedad, esto dado que es muy baja la frecuencia de personas afectadas y por ende los casos estudiados y atendidos. De esta manera es muy poca y en algunos casos por no decir en la gran mayoría errada la información que se tiene sobre esta enfermedad.

En el transcurso de mi vida, encontré que muchas son las personas que se cuestionan al respecto, entre ellas los afectados por dicha condición, familiares – cuidadores, profesionales del sector salud, curiosos, o que desean saber mas de amc por cultura general.

Y aprovechando mis muchos o pocos conocimientos al respecto y dados los añitos que tengo de conocerla, convivir y ser parte de ella, y explicarle a los profesionales en salud cada vez que tengo cita medica, a amigos, familiares, etc, deseo compartirlos con las personas a las que les interese, (con el fin de reducir los mitos acerca de ella y buscar mejoría en la atención en salud para otros que como yo tienen amc).

La Asociación Iberoamericana De Artrogriposis Múltiple Congénita (ASOIBEROAMC) es una organización sin animo de lucro cuya misión es aportar información científica y experiencial sobre la amc, con el fin de lograr una mejor calidad de vida, bienestar e integración en las personas afectadas, así como las de sus familias, impulsando su rehabilitación, habilitación funcional y una plena integración a la sociedad. Donde se busca dar a conocer la enfermedad y aprender a normalizarla en el desarrollo de la vida diaria, comenzando nuestra formación en amc desde el primer vinculo social que es la familia, continuando con los cuidadores, profesionales del sector salud, educadores y población en general, en un espacio siempre abierto para la multiculturalidad.

Este artículo ha sido escrito por Janeth Beatriz Peñaloza Sánchez como colaboración con Raras pero no invisibles. Podéis seguirlos en: @asoiberoamc.  Más información en : www.asoiberoamc.wix.com/asoiberoamc o escribirles a asoiberoamc@outlook.com.com / japesa81@hotmail.com

692 pensamientos sobre “Asociación Iberoamericana de Artrogriposis Múltiple Congénita (Asoiberoamc)”

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