Santo Domingo, 3 mar.- La Alianza Dominicana de Asociaciones de Pacientes (Adapa) realiz\u00f3 un acto para visibilizar la realidad de las personas con enfermedades raras y reiter\u00f3 su llamado al Congreso Nacional para modificar la Ley 42-01 General de Salud.<\/p>\n
En la actividad participaron decenas de familias afectadas, mientras que la presidenta de la entidad, Denisse Vallejo, destac\u00f3 que aunque ha crecido la conciencia social sobre estos padecimientos, a\u00fan est\u00e1 pendiente la reforma legal que garantice una atenci\u00f3n integral.<\/p>\n
Vallejo record\u00f3 que hace un a\u00f1o entregaron una propuesta a la comisi\u00f3n del Senado encargada de estudiar la reforma, pero el anteproyecto qued\u00f3 fuera al concluir la legislatura el 12 de enero.<\/p>\n
Por ello, anunci\u00f3 que ser\u00e1 reintroducido en la nueva legislatura ordinaria iniciada el 27 de febrero \u00faltimo, con el objetivo de asegurar tamizaje neonatal, cobertura universal, acceso sostenible a medicamentos y terapias de \u00faltima generaci\u00f3n, as\u00ed como la creaci\u00f3n de un registro nacional de pacientes, un Consejo Nacional de Enfermedades Raras y una direcci\u00f3n especializada.<\/p>\n
La propuesta tambi\u00e9n contempla diagn\u00f3stico oportuno para reducir discapacidad y sufrimiento, instalaci\u00f3n de centros de referencia, protecci\u00f3n contra la discriminaci\u00f3n, apoyo integral a pacientes, familiares y cuidadores, adem\u00e1s de mayor inclusi\u00f3n educativa, social y laboral, promoci\u00f3n de investigaciones y capacitaci\u00f3n del personal de salud.<\/p>\n
Entre las enfermedades raras mencionadas figuran esclerosis m\u00faltiple, artritis reumatoidea, autismo, neuromielitis \u00f3ptica, distrofia muscular, cardiopat\u00edas cong\u00e9nitas e hidrocefalia, entre otras.<\/p>\n
La iniciativa cuenta con el respaldo de 17 organizaciones miembros de Adapa, que abogan por una transformaci\u00f3n del marco legal para garantizar derechos y mejorar la calidad de vida de quienes viven con estas condiciones.<\/p>\n
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Comp\u00e1rtelo en tus redes:<\/p>\n<\/div>\n
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