{"id":732,"date":"2017-02-25T21:00:58","date_gmt":"2017-02-25T21:00:58","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=732"},"modified":"2026-01-20T13:52:52","modified_gmt":"2026-01-20T18:52:52","slug":"quick-facts","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/es\/quick-facts\/","title":{"rendered":"Datos breves"},"content":{"rendered":"<p>[et_pb_section fb_built=\u201d1\u2033 fullwidth=\u201don\u201d deshabilitado_encendido=\u201dapagado|apagado|apagado\u201d _builder_version=\u201d4.16\u2033 border_width_bottom=\u201d55px\u201d border_color_bottom=\u201d#29327a\u201d global_colors_info=\u201d{}\u201d][et_pb_fullwidth_header _builder_version=\u201d4.16\u2033 tama\u00f1o_de_fuente_t\u00edtulo=\u201d55\u2033 color_de_fondo=\u201d#29327a\u201d imagen_de_fondo=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Acerca-del-encabezado.jpg\u201d posici\u00f3n_de_fondo=\u201dcentro_izquierda\u201d relleno_personalizado=\u201d9vw||9vw||verdadero\u201d relleno_personalizado_tablet=\u201d\u201d padding_personalizado_tel\u00e9fono=\u201d|56px||\u201d padding_personalizado_\u00faltima_edici\u00f3n=\u201den|escritorio\u201d tama\u00f1o_fuente_t\u00edtulo_tableta=\u201d45px\u201d tama\u00f1o_fuente_t\u00edtulo_tel\u00e9fono=\u201d40px\u201d tama\u00f1o_fuente_t\u00edtulo_\u00faltima_edici\u00f3n=\u201den|tel\u00e9fono\u201d z_index_tableta=\u201d500\u2033 elemento_principal_css_personalizado=\u201dposici\u00f3n_fondo: centro 18% !importante;\u201d informaci\u00f3n_colores_global=\u201d{}\u201d]<\/p>\n<h1>Progeria<\/h1>\n<h1>Datos breves<\/h1>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 use_custom_gutter=\u201don\u201d gutter_width=\u201d1\u2033 specialist=\u201don\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201don|desktop\u201d module_class_1=\u201dbarra lateral-navegaci\u00f3n-secundaria\u201d module_class=\u201dhuella-de-mano-bg\u201d _builder_version=\u201d4.16\u2033 background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/huella-de-mano-azul-solamente.png\u201d parallax=\u201don\u201d parallax_method=\u201doff\u201d ancho_interior=\u201d100%\u201d ancho_m\u00e1ximo_interior=\u201d100%\u201d relleno_personalizado=\u201d0|0px|54px|0px|falso|falso\u201d z_index_tablet=\u201d500\u2033 ancho_borde_superior=\u201d10px\u201d color_border_superior=\u201d#8fd2ed\u201d uso_ancho_personalizado=\u201dactivado\u201d unidad_ancho=\u201ddesactivado\u201d porcentaje_ancho_personalizado=\u201d100%\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_column tipo=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_16\u2033 deshabilitado_en=\u201dencendido|encendido|apagado\u201d module_class=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 animation_style=\u201dfade\u201d z_index_tablet=\u201d500\u2033 border_width_right=\u201d5px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column tipo=\u201d3_4\u2033 columnas_especializadas=\u201d3\u2033 _versi\u00f3n_constructor=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_row_inner column_structure=\u201d1_2,1_2\u2033 custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner type=\u201d1_2\u2033 save_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201dPRF EN CIFRAS \u201d _builder_version=\u201d4.27.4\u2033 header_4_font_size=\u201d24px\u201d animation_direction=\u201dtop\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<div class=\"wpb_text_column wpb_content_element\">\n<div class=\"wpb_wrapper\">\n<h4><strong>PRF EN CIFRAS\u00a0<\/strong><\/h4>\n<p><em>Al 31 de diciembre de 2025<\/em><\/p>\n<ul>\n<li>Ni\u00f1os\/j\u00f3venes adultos identificados que viven con progeria y laminopat\u00edas progeroides: 213* en 51 pa\u00edses<\/li>\n<li>*155 de estos ni\u00f1os\/adultos j\u00f3venes tienen s\u00edndrome de progeria de Hutchinson-Gilford (HGPS o progeria) y los otros 58 tienen laminopat\u00edas progeroides.<\/li>\n<li>Ensayos cl\u00ednicos de f\u00e1rmacos contra la progeria financiados por el PRF: 5<\/li>\n<li>Subvenciones financiadas: 85, por un total de $9,3 millones<\/li>\n<li>L\u00edneas celulares en el Banco de C\u00e9lulas y Tejidos PRF: 211<\/li>\n<li>Ni\u00f1os en la base de datos m\u00e9dica y de investigaci\u00f3n de PRF: 224<\/li>\n<li>Reuniones cient\u00edficas internacionales sobre progeria: 15<\/li>\n<li>N\u00famero de idiomas a los que se traducen los programas y materiales de atenci\u00f3n m\u00e9dica de PRF: 37<\/li>\n<\/ul>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=\u201d1_2\u2033 saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta title=\u201dMisi\u00f3n\u201d button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/01\/Quick-Facts-December-31-2025-FINAL.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rIiwic2V0dGluZ3MiOnsiYmVmb3JlIjoiIiwiYWZ0ZXIiOiIiLCJ0ZXh0IjoicG9zdF90aXRsZSIsImN1c3RvbV90ZXh0IjoiIn19@\u201d admin_label=\u201dHoja informativa en PDF y llamada a la acci\u00f3n\u201d _builder_version=\u201d4.27.4\u2033 _dynamic_attributes=\u201dbutton_text\u201d background_color=\u201d#29327a\u201d custom_margin=\u201d|||35px\u201d custom_margin_tablet=\u201d|||0px\u201d custom_margin_phone=\u201d\u201d custom_margin_last_edited=\u201don|desktop\u201d animation_style=\u201dslide\u201d animation_direction=\u201dright\u201d animation_intensity_slide=\u201d25%\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<p>Descubrir tratamientos y la cura para la progeria de Hutchinson-Gilford y sus trastornos relacionados con el envejecimiento, incluida la enfermedad card\u00edaca.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_cta][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d0px|35px|35px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201d\u00bfQu\u00e9 es la progeria? \u201d _builder_version=\u201d4.27.4\u2033 header_4_font_size=\u201d24px\u201d custom_margin=\u201d30px||30px||true\u201d animation_direction=\u201dtop\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<div class=\"wpb_text_column wpb_content_element\">\n<div class=\"wpb_wrapper\">\n<h4><strong>\u00bfQu\u00e9 es la progeria?\u00a0<\/strong><\/h4>\n<p>La progeria, tambi\u00e9n conocida como s\u00edndrome de progeria de Hutchinson-Gilford (HGPS), es una enfermedad gen\u00e9tica rara y mortal que se caracteriza por un \u201cenvejecimiento r\u00e1pido\u201d en los ni\u00f1os. Sin el tratamiento con lonafarnib (Zokinvy), todos los ni\u00f1os con progeria morir\u00edan de la misma enfermedad card\u00edaca que afecta a millones de adultos que envejecen normalmente (arteriosclerosis), pero a una edad promedio de tan solo 14,5 a\u00f1os. Sorprendentemente, su intelecto no se ve afectado y, a pesar de los cambios f\u00edsicos significativos en sus j\u00f3venes cuerpos, estos ni\u00f1os extraordinarios son inteligentes, valientes y llenos de vida.<\/p>\n<p>Para obtener m\u00e1s informaci\u00f3n sobre la causa de la progeria, haga clic en <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2020\/02\/What-is-Progeria-from-LATS.mp4\" target=\"_blank\" rel=\"noopener noreferrer\">aqu\u00ed<\/a> para ver un breve video de descripci\u00f3n general narrado por el Dr. Leslie Gordon, tomado de <em>La vida seg\u00fan Sam<\/em> (2013).<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][et_pb_text admin_label=\u201dTexto\u201d _builder_version=\u201d4.27.4\u2033 header_font=\u201d||||||||\u201d header_4_font=\u201d||||||||\u201d header_4_font_size=\u201d24px\u201d animation_direction=\u201dtop\u201d hover_enabled=\u201d0\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<div class=\"wpb_text_column wpb_content_element\">\n<div class=\"wpb_wrapper\">\n<h4><strong>Acerca de PRF<\/strong><\/h4>\n<p>La Fundaci\u00f3n para la Investigaci\u00f3n de la Progeria (PRF) fue establecida en 1999 por\u00a0<a href=\"mailto:lgordon@progeriaresearch.org\">Doctores Leslie Gordon<\/a> y Scott Berns, padres de un ni\u00f1o con progeria, junto con numerosos amigos y familiares dedicados que vieron la necesidad de un recurso de investigaci\u00f3n m\u00e9dica para m\u00e9dicos, pacientes y familiares de personas con progeria. Desde entonces, PRF ha impulsado el descubrimiento del gen de la progeria y el primer tratamiento farmacol\u00f3gico para esta enfermedad. PRF ha desarrollado programas y servicios para ayudar a las personas afectadas por la progeria y a los cient\u00edficos que la investigan. Hoy en d\u00eda, PRF es la \u00fanica organizaci\u00f3n sin fines de lucro dedicada exclusivamente a encontrar tratamientos y la cura para la progeria. PRF es reconocida como un excelente ejemplo de una organizaci\u00f3n de investigaci\u00f3n traslacional exitosa, que ha pasado de la creaci\u00f3n al descubrimiento del gen y al primer tratamiento farmacol\u00f3gico en tan solo 13 a\u00f1os.<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner estructura_columna=\u201d1_2,1_2\u2033 relleno_personalizado_\u00faltima_edici\u00f3n=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d0px|35px|0px||falso|falso\u201d relleno_personalizado_tablet=\u201d|35px|50px|35px||verdadero\u201d relleno_personalizado_phone=\u201d\u201d direcci\u00f3n_animaci\u00f3n=\u201darriba\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_column_inner tipo=\u201d1_2\u2033 tipo_columna_especialidad_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201dD\u00f3lares totales recaudados\u201d _builder_version=\u201d4.16\u2033 header_text_align=\u201dcenter\u201d header_font_size=\u201d41px\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<h1>Ingresos totales<\/h1>\n<p>[\/et_pb_text][et_pb_number_counter title=\u201d1999 hasta el 31 de diciembre de 2025\u2033 number=\u201d103.569.806\u2033 percent_sign=\u201doff\u201d disabled_on=\u201don|on|off\u201d admin_label=\u201dContador de n\u00fameros\u201d module_class=\u201ddollar\u201d _builder_version=\u201d4.27.4\u2033 title_level=\u201dh5\u2033 number_font_size=\u201d65px\u201d custom_margin=\u201d36px||36px||true\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<br \/>\n[\/et_pb_number_counter][et_pb_number_counter title=\u201d1999 hasta el 31 de diciembre de 2025\u2033 number=\u201d103.569.806\u2033 percent_sign=\u201doff\u201d disabled_on=\u201doff|off|on\u201d module_class=\u201ddollar\u201d _builder_version=\u201d4.27.4\u2033 title_level=\u201dh5\u2033 title_font=\u201d||||||||\u201d number_font=\u201d||||||||\u201d number_font_size=\u201d60px\u201d custom_margin=\u201d36px||36px||true\u201d hover_enabled=\u201d0\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<br \/>\n[\/et_pb_number_counter][\/et_pb_column_inner][et_pb_column_inner tipo=\u201d1_2\u2033 tipo_columna_especial_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d relleno_personalizado__hover=\u201d|||\u201d][et_pb_text _builder_version=\u201d4.24.0\u2033 relleno_personalizado=\u201d|||\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d]<\/p>\n<p>M\u00e1s de 80% de los gastos anuales de PRF se destinan de manera constante a sus programas y servicios, un factor que nos ha ayudado a lograr la codiciada calificaci\u00f3n de 4 estrellas de Charity Navigator durante diez a\u00f1os consecutivos.<\/p>\n<p>El apoyo que hemos recibido hizo posible el descubrimiento del gen de la progeria, los ensayos cl\u00ednicos de la progeria y todos nuestros otros avances extraordinarios. Con la ayuda de los patrocinadores actuales y nuevos,\u00a0<em>voluntad<\/em>\u00a0Ganemos esta carrera contra el tiempo y encontremos tratamientos y la cura para estos ni\u00f1os especiales. Adem\u00e1s, los descubrimientos en el tratamiento de la progeria tambi\u00e9n pueden ayudar a millones de personas con enfermedades card\u00edacas y a toda la poblaci\u00f3n que envejece.<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=\u201d4.16\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d41px||\u201d custom_margin_tablet=\u201d0px||\u201d margen_personalizado_tel\u00e9fono=\u201d\u201d margen_personalizado_\u00faltima_edici\u00f3n=\u201dactivado|tel\u00e9fono\u201d relleno_personalizado=\u201d39,4375px|20px|35px|20px|falso|verdadero\u201d estilo_animaci\u00f3n=\u201ddiapositiva\u201d direcci\u00f3n_animaci\u00f3n=\u201dderecha\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_inferior=\u201d10px\u201d color_border_inferior=\u201d#8fd2ed\u201d estilo_sombra_cuadrado=\u201dpreestablecido1\u2033 desenfoque_cuadrado_sombra=\u201d38px\u201d propagaci\u00f3n_sombra_cuadrado=\u201d-12px\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_column_inner tipo_columna_especialidad_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201dProgramas y servicios de PRF\u201d _builder_version=\u201d4.16\u2033 text_orientation=\u201dcenter\u201d background_layout=\u201ddark\u201d custom_padding=\u201d|10px||10px||true\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<h1 data-fontsize=\"34\" data-lineheight=\"48\">Programas y servicios de PRF<\/h1>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=\u201d1_2,1_2\u2033 custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner type=\u201d1_2\u2033 saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201dPrimeros ensayos cl\u00ednicos y tratamiento de la progeria\u201d _builder_version=\u201d4.27.4\u2033 link_text_color=\u201d#00b2e2\u2033 header_4_font_size=\u201d24px\u201d custom_margin=\u201d|||\u201d custom_padding_tablet=\u201d||35px\u201d custom_padding_phone=\u201d\u201d custom_padding_last_edited=\u201don|desktop\u201d animation_direction=\u201dtop\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<div class=\"wpb_text_column wpb_content_element\">\n<div class=\"wpb_wrapper\">\n<h4><strong>La primera progeria de la historia\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/es\/clinical-trials\/\">Ensayos cl\u00ednicos de medicamentos<\/a><\/strong>\u00a0<strong>y Tratamiento<\/strong><\/h4>\n<p>Los ensayos cl\u00ednicos de medicamentos patrocinados por PRF atraen a ni\u00f1os de todo el mundo para recibir tratamientos prometedores que pueden ayudar a mejorar la enfermedad y prolongar la vida de los ni\u00f1os con progeria.<\/p>\n<p><i>En 2020, la Administraci\u00f3n de Alimentos y Medicamentos de los Estados Unidos (FDA) hizo historia con la aprobaci\u00f3n del lonafarnib (nombre comercial Zokinvy\u2122), un inhibidor de la farnesiltransferasa (ITF), como el primer tratamiento para la progeria y las laminopat\u00edas progeroides. Se ha demostrado que el lonafarnib mejora muchos aspectos de la enfermedad, incluyendo el sistema vascular vital, y aumenta la supervivencia promedio en 4,3 a\u00f1os. Para obtener m\u00e1s informaci\u00f3n sobre esta emocionante noticia, haga clic en <a href=\"https:\/\/www.progeriaresearch.org\/es\/2023\/03\/15\/progerinbiomarker\/\">aqu\u00ed<\/a>. <\/i><\/p>\n<p>En 2016, PRF inici\u00f3 un ensayo con dos f\u00e1rmacos, a\u00f1adiendo everolimus, con la esperanza de que los dos medicamentos juntos fueran incluso m\u00e1s eficaces que el lonafarnib solo. <i>Se trata de avances notables en la b\u00fasqueda de una cura.\u00a0<\/i><\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=\u201d1_2\u2033 save_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta title=\u201d\u00a1Encontremos la cura!\u201d button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dDonar ahora\u201d _builder_version=\u201d4.16\u2033 header_font=\u201d||||||||\u201d color_de_fondo=\u201d#00b2e2\u2033 bot\u00f3n_personalizado=\u201dactivado\u201d color_del_texto_del_bot\u00f3n=\u201d#ffffff\u201d fuente_del_bot\u00f3n=\u201d||||||||\u201d informaci\u00f3n_global_colors=\u201d{}\u201d]<\/p>\n<div id=\"pastingspan1\">\n<article>Su donaci\u00f3n ayuda a la Fundaci\u00f3n para la Investigaci\u00f3n de la Progeria\u00a0<\/article>\n<article><em><strong>tratar<\/strong><\/em>\u00a0Los ni\u00f1os con progeria hoy en d\u00eda<\/article>\n<\/div>\n<div>y\u00a0<em><strong>curar<\/strong><\/em><strong>\u00a0<\/strong>ellos en el futuro.<\/div>\n<p>[\/et_pb_cta][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner save_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_toggle title=\u201dRegistro Internacional de Progeria \u201d open=\u201don\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dRegistro Internacional de Progeria \u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d relleno_personalizado=\u201d|50px||50px||verdadero\u201d estilo_animaci\u00f3n=\u201ddiapositiva\u201d direcci\u00f3n_animaci\u00f3n=\u201dsuperior\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_todo=\u201d0px\u201d informaci\u00f3n_colores_global=\u201d{}\u201d]<\/p>\n<p>Mantiene informaci\u00f3n centralizada sobre los ni\u00f1os y las familias que viven con progeria. Esto garantiza la r\u00e1pida distribuci\u00f3n de cualquier informaci\u00f3n nueva que pueda beneficiar a los ni\u00f1os.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/international-registry\/\" target=\"_blank\" rel=\"noopener noreferrer\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dBanco de c\u00e9lulas y tejidos\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dBanco de c\u00e9lulas y tejidos\u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201darriba\u201d animation_intensity_slide=\u201d25%\u201d z_index_tablet=\u201d500\u2033 border_width_all=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>El banco de PRF proporciona a los investigadores material gen\u00e9tico y biol\u00f3gico de pacientes con progeria y sus familias para que se puedan realizar investigaciones sobre la progeria y otras enfermedades relacionadas con el envejecimiento que nos acerquen a la cura. PRF ha recopilado unas impresionantes 214 l\u00edneas celulares de ni\u00f1os afectados y sus familiares en todo el mundo, incluidas 10 l\u00edneas de c\u00e9lulas madre pluripotentes inducidas (iPSC).<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/cell-and-tissue-bank\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dBase de datos m\u00e9dica y de investigaci\u00f3n\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dBase de datos m\u00e9dica y de investigaci\u00f3n\u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201dtop\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_todo=\u201d0px\u201d informaci\u00f3n_colores_global=\u201d{}\u201d]<\/p>\n<p>La base de datos es una recopilaci\u00f3n centralizada de informaci\u00f3n m\u00e9dica de pacientes con progeria de todo el mundo. Los datos se analizan rigurosamente para ayudarnos a entender mejor la progeria y dise\u00f1ar recomendaciones de tratamiento. En 2010, este an\u00e1lisis contribuy\u00f3 al Manual de atenci\u00f3n m\u00e9dica integral sobre progeria de PRF, cuyo objetivo es optimizar la calidad de vida. El Manual est\u00e1 disponible en ingl\u00e9s, espa\u00f1ol, portugu\u00e9s, ruso e italiano.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/medical-database\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dPrueba de diagn\u00f3stico\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dPrueba de diagn\u00f3stico\u201d _builder_version=\u201d4.19.4\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201darriba\u201d animation_intensity_slide=\u201d25%\u201d z_index_tablet=\u201d500\u2033 border_width_all=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Este programa se desarroll\u00f3 a ra\u00edz del descubrimiento del gen en 2003 para que los ni\u00f1os, sus familias y los cuidadores m\u00e9dicos puedan obtener un diagn\u00f3stico cient\u00edfico definitivo. Esto puede traducirse en un diagn\u00f3stico m\u00e1s temprano, menos diagn\u00f3sticos err\u00f3neos e intervenci\u00f3n m\u00e9dica temprana para garantizar una mejor calidad de vida para los ni\u00f1os.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/the-prf-diagnostic-testing-program\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dTalleres cient\u00edficos sobre progeria\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dTalleres cient\u00edficos sobre progeria\u201d _builder_version=\u201d4.27.4\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201dtop\u201d animation_intensity_slide=\u201d25%\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 border_width_all=\u201d0px\u201d global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<ul>\n<li>La PRF ha organizado 14 congresos cient\u00edficos que han reunido a cient\u00edficos y m\u00e9dicos de todo el mundo para compartir su experiencia y datos cient\u00edficos de vanguardia. Estos talleres fomentan la colaboraci\u00f3n en la lucha contra esta devastadora enfermedad.<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/scientific-meetings\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dSubvenciones para la investigaci\u00f3n\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dSubvenciones para la investigaci\u00f3n\u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201dtop\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_todo=\u201d0px\u201d informaci\u00f3n_colores_global=\u201d{}\u201d]<\/p>\n<p>A trav\u00e9s de la revisi\u00f3n por pares realizada por nuestro Comit\u00e9 de Investigaci\u00f3n M\u00e9dica voluntario, PRF ha financiado proyectos en todo el mundo que han llevado a importantes descubrimientos sobre la progeria, las enfermedades card\u00edacas y el envejecimiento. El programa de investigaci\u00f3n de PRF se ha actualizado a partir de septiembre de 2018 para reflejar las necesidades de investigaci\u00f3n actuales en los campos de la progeria, el envejecimiento y las enfermedades card\u00edacas.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/grants-funded\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dPublicaciones e investigaci\u00f3n\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dPublicaciones e investigaci\u00f3n\u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201darriba\u201d animation_intensity_slide=\u201d25%\u201d z_index_tablet=\u201d500\u2033 border_width_all=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Tanto los cient\u00edficos cl\u00ednicos como los cient\u00edficos b\u00e1sicos han utilizado las subvenciones, las c\u00e9lulas y los tejidos y la base de datos del PRF; sus descubrimientos se publican en revistas cient\u00edficas de primer nivel. \u00a1El n\u00famero medio anual de publicaciones cient\u00edficas sobre la progeria desde 2002 es m\u00e1s de 20 veces superior al de los 50 a\u00f1os anteriores!<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/scientific-publications\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=\u201dPrograma de traducci\u00f3n PRF\u201d open_toggle_background_color=\u201d#f7f7f7\u2033 closed_toggle_text_color=\u201d#ffffff\u201d closed_toggle_background_color=\u201d#00b2e2\u2033 icon_color=\u201d#ffc15e\u201d open_icon_color=\u201d#ffc15e\u201d admin_label=\u201dPrograma de traducci\u00f3n PRF\u201d _builder_version=\u201d4.16\u2033 title_text_color=\u201d#00b2e2\u2033 background_color=\u201d#ffffff\u201d custom_margin=\u201d10px||10px||true\u201d custom_padding=\u201d|50px||50px||true\u201d animation_style=\u201dslide\u201d animation_direction=\u201dtop\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_todo=\u201d0px\u201d informaci\u00f3n_colores_global=\u201d{}\u201d]<\/p>\n<p><strong><em>En contacto con el mundo<\/em><\/strong>Con una destacada presencia mundial, PRF elimina las barreras de comunicaci\u00f3n para los pacientes y sus familias en todo el mundo. Esta iniciativa ha logrado traducir el programa y los materiales de atenci\u00f3n m\u00e9dica de PRF a 38 idiomas.<\/p>\n<p><a href=\"https:\/\/www.progeriaresearch.org\/es\/translators-needed\/\">M\u00e1s informaci\u00f3n<\/a><\/p>\n<p>[\/et_pb_toggle][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner estructura_columna=\u201d1_2,1_2\u2033 relleno_personalizado_\u00faltima_edici\u00f3n=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d39.4375px|35px|0px||falso|falso\u201d relleno_personalizado_tablet=\u201d|35px||35px||verdadero\u201d relleno_personalizado_phone=\u201d\u201d direcci\u00f3n_animaci\u00f3n=\u201darriba\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_column_inner tipo=\u201d1_2\u2033 tipo_columna_especialidad_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d custom_css_main_element=\u201dwidth: 30% !important;\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Sammy-Basso-en-EE.UU.-Square.jpg\u201d align=\u201dcenter\u201d align_tablet=\u201dcenter\u201d align_phone=\u201d\u201d align_last_edited=\u201don|desktop\u201d _builder_version=\u201d4.16\u2033 border_radii=\u201don|100%|100%|100%|100%\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_image][\/et_pb_column_inner][et_pb_column_inner tipo=\u201d1_2\u2033 tipo_columna_especial_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d elemento_principal_css_personalizado=\u201dancho: 70% !important;\u201d informaci\u00f3n_de_colores_globales=\u201d{}\u201d relleno_personalizado__hover=\u201d|||\u201d][et_pb_text _builder_version=\u201d4.27.4\u2033 fuente_texto=\u201d||||||||\u201d fuente_enlace=\u201d||||||||\u201d color_texto_enlace=\u201d#00b2e2\u2033 fuente_encabezado=\u201d||||||||\u201d fuente_encabezado_4=\u201d||||||||\u201d tama\u00f1o_fuente_encabezado_4=\u201d24px\u201d margen_personalizado=\u201d|||\u201d margen_personalizado_tableta=\u201d|||25px\u201d margen_personalizado_tel\u00e9fono=\u201d\u201d margen_personalizado_\u00faltima_edici\u00f3n=\u201den|escritorio\u201d relleno_personalizado=\u201d||50px\u201d direcci\u00f3n_animaci\u00f3n=\u201darriba\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d]<\/p>\n<div class=\"wpb_text_column wpb_content_element\">\n<div class=\"wpb_wrapper\">\n<h4>Conciencia p\u00fablica<\/h4>\n<p>Nuestro sitio web brinda acceso a la informaci\u00f3n m\u00e1s reciente sobre la investigaci\u00f3n de la progeria y apoyo para las familias. <strong><a href=\"https:\/\/www.facebook.com\/ProgeriaResearch\">Facebook<\/a>,\u00a0<a href=\"https:\/\/www.tiktok.com\/@progeriaresearch\">TikTok, <\/a><a href=\"https:\/\/www.instagram.com\/progeriaresearch\/\">Instagram<\/a>, <a href=\"http:\/\/www.youtube.com\/progeriaresearchorg\">YouTube<\/a>, <a href=\"https:\/\/www.linkedin.com\/company\/3520192\">LinkedIn<\/a>, <\/strong>y otros medios, el alcance directo de PRF en las redes sociales supera el mill\u00f3n de personas. La historia de PRF ha aparecido en CNN, ABC News, Primetime, Dateline, The Katie Couric Show, NPR, The Associated Press y The Today Show, en las revistas Time y People, The New York Times, The Wall Street Journal y muchos otros medios de comunicaci\u00f3n de gran difusi\u00f3n. Adem\u00e1s, la premiada pel\u00edcula de HBO de 2013 <a href=\"https:\/\/www.progeriaresearch.org\/es\/life-according-to-sam\/\"><strong><em>La vida seg\u00fan Sam<\/em><\/strong><\/a> ha creado conciencia de una manera \u00fanica e inspiradora. PRF tambi\u00e9n gestiona\u00a0<strong><a href=\"https:\/\/www.progeriaresearch.org\/es\/find-the-children\/\" target=\"_blank\" rel=\"noopener noreferrer\">Encuentra a los ni\u00f1os<\/a><\/strong>, una campa\u00f1a mundial de concientizaci\u00f3n para encontrar ni\u00f1os con progeria en todo el mundo, para que puedan obtener la ayuda \u00fanica que necesitan.<\/p>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=\u201d4.16\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d41px||\u201d custom_margin_tablet=\u201d0px||\u201d margen_personalizado_tel\u00e9fono=\u201d\u201d margen_personalizado_\u00faltima_edici\u00f3n=\u201dactivado|tel\u00e9fono\u201d relleno_personalizado=\u201d39,4375px|20px|35px|20px|falso|verdadero\u201d estilo_animaci\u00f3n=\u201ddiapositiva\u201d direcci\u00f3n_animaci\u00f3n=\u201dderecha\u201d intensidad_animaci\u00f3n_diapositiva=\u201d25%\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_inferior=\u201d10px\u201d color_border_inferior=\u201d#8fd2ed\u201d estilo_sombra_cuadrado=\u201dpreestablecido1\u2033 desenfoque_cuadrado_sombra=\u201d38px\u201d propagaci\u00f3n_sombra_cuadrado=\u201d-12px\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_column_inner tipo_columna_especialidad_guardada=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201d\u00bfQui\u00e9n es qui\u00e9n en PRF?\u201d _builder_version=\u201d4.16\u2033 text_orientation=\u201dcenter\u201d background_layout=\u201ddark\u201d custom_padding=\u201d|10px||10px||true\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<h1 data-fontsize=\"34\" data-lineheight=\"48\">\u00bfQui\u00e9n es qui\u00e9n en PRF?<\/h1>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner save_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_team_member name=\u201d Audrey Gordon, Esq.\u201d position=\u201dPresidenta y Directora Ejecutiva\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Audrey-gala-09-square.jpg\u201d admin_label=\u201d Audrey Gordon, Esq.\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.16\u2033 custom_margin=\u201d||45px\u201d link_option_url=\u201dmailto:agordon@progeriaresearch.org\u201d link_option_url_new_window=\u201don\u201d z_index_tablet=\u201d500\u2033 locking=\u201doff\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Al trabajar en estrecha colaboraci\u00f3n con la Junta Directiva, los funcionarios, el personal y los voluntarios, la Sra. Gordon es responsable de la gesti\u00f3n diaria y de garantizar el crecimiento financiero y el desarrollo del programa de la Fundaci\u00f3n de Investigaci\u00f3n de Progeria.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=\u201dLeslie Gordon, MD, PhD\u201d position=\u201dDirector m\u00e9dico\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Lelsiesp.jpg\u201d admin_label=\u201dLeslie Gordon, MD, PhD\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.16\u2033 custom_margin=\u201d||45px\u201d link_option_url=\u201dmailto:Leslie_Gordon@brown.edu\u201d link_option_url_new_window=\u201don\u201d z_index_tablet=\u201d500\u2033 locking=\u201doff\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>La Dra. Gordon cofund\u00f3 PRF con amigos y familiares despu\u00e9s de que a su hijo, Sam, le diagnosticaran progeria. La Dra. Gordon supervisa los programas relacionados con la investigaci\u00f3n de PRF y es copresidenta de los ensayos cl\u00ednicos de medicamentos para la progeria. Es profesora adjunta de investigaci\u00f3n pedi\u00e1trica en la Facultad de Medicina Warren Alpert de la Universidad de Brown y en el Hospital Infantil Hasbro en Providence, Rhode Island, y cient\u00edfica del Hospital Infantil de Boston y de la Facultad de Medicina de Harvard.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=\u201dScott D. Berns, MD, MPH, FAAP\u201d position=\u201dPresidente, Junta Directiva\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Scott-Berns.jpg\u201d admin_label=\u201dScott D. Berns, MD, MPH, FAAP\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.4\u2033 custom_margin=\u201d||45px\u201d link_option_url=\u201dmailto:sberns@progeriaresearch.org\u201d link_option_url_new_window=\u201don\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 locked=\u201doff\u201d global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<p>El Dr. Berns, padre de Sam, es cofundador de la Fundaci\u00f3n para la Investigaci\u00f3n de la Progeria y presidente de su junta directiva. Es pediatra certificado y profesor cl\u00ednico de Pediatr\u00eda en la Facultad de Medicina Alpert de la Universidad de Brown.<br \/>Recientemente se retir\u00f3 como presidente y director ejecutivo del Instituto Nacional para la Calidad de la Salud Infantil, una organizaci\u00f3n independiente sin fines de lucro que trabaja para mejorar la salud infantil.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member name=\u201dCarlos Luiz Silva\u201d position=\u201dEmbajador de la PRF\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/03\/Carlos-WhatsApp-from-Tatiana-3-12-25.jpeg\u201d admin_label=\u201dCarlos\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.4\u2033 position_font=\u201d|700|||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d hover_enabled=\u201d0\u2033 locked=\u201doff\u201d global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n<p align=\"left\">Carlos es embajador juvenil de PRF y comparte la perspectiva \u00fanica de su experiencia con la progeria a trav\u00e9s de diversos medios. Diagnosticado con progeria a los 4 a\u00f1os, siempre se sinti\u00f3 atra\u00eddo por los juguetes de construcci\u00f3n. Carlos es conocido por su amabilidad e inteligencia, y por su constante alegr\u00eda con su calidez y humor. Actualmente, cursa noveno grado en una escuela concertada en Cambridge, Massachusetts, donde sus materias favoritas son Ciencias e Historia, y planea graduarse en Ciencias o Derecho. Carlos siempre ha tenido una personalidad audaz y fuerte, trabajando duro en todo lo que se propone y nunca renunciando a sus sue\u00f1os.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 module_class=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d-2px|||||\u201d relleno_personalizado=\u201d0|0px|0|0px|falso|falso\u201d \u00edndice_z_tableta=\u201d500\u2033 ancho_borde_superior=\u201d12px\u201d color_border_superior=\u201d#00b2e2\u2033 m\u00f3dulo_global=\u201d133\u2033 bloqueado=\u201ddesactivado\u201d informaci\u00f3n_colores_globales=\u201d{}\u201d][et_pb_row estructura_columna=\u201d1_4,1_4,1_2\u2033 igualar=\u201dactivado\u201d clase_m\u00f3dulo=\u201d et_pb_row_ancho_completo\u201d versi\u00f3n_compilador=\u201d4.16\u2033 ancho=\u201d89%\u201d ancho_tableta=\u201d80%\u201d ancho_tel\u00e9fono=\u201d\u201d \u00faltimo_ancho_edici\u00f3n=\u201dactivado|escritorio\u201d ancho_m\u00e1ximo=\u201d89%\u201d ancho_m\u00e1ximo_tableta=\u201d80%\u201d max_width_phone=\u201d\u201d max_width_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 make_fullwidth=\u201don\u201d width_unit=\u201doff\u201d custom_width_percent=\u201d100%\u201d global_colors_info=\u201d{}\u201d][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d Informaci\u00f3n de colores globales = &quot;{}&quot; Relleno personalizado__hover = &quot;|||&quot;][et_pb_cta URL del bot\u00f3n = &quot;https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz&quot; Texto del bot\u00f3n = &quot;Reg\u00edstrate ahora&quot; Etiqueta de administrador = &quot;Suscr\u00edbete para recibir actualizaciones&quot; Clase del m\u00f3dulo = &quot;sign-btn&quot; Versi\u00f3n del generador = &quot;4.27.4&quot; Tama\u00f1o de fuente del encabezado = &quot;25px&quot; Color de fondo = &quot;#29327a&quot; Estilo de animaci\u00f3n = &quot;diapositiva&quot; Direcci\u00f3n de la animaci\u00f3n = &quot;izquierda&quot; Intensidad de la animaci\u00f3n = &quot;25%&quot; URL de la opci\u00f3n del enlace = &quot;https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz&quot; Tama\u00f1o de fuente del encabezado para tableta = &quot;Tama\u00f1o de fuente del encabezado para tel\u00e9fono = &quot;30px&quot; tama\u00f1o de fuente del encabezado, \u00faltima edici\u00f3n = \u00abactivado|escritorio\u00bb \u00edndice z_tableta = \u00ab500\u00bb radio del borde = \u00abactivado|25px|25px|25px|25px\u00bb informaci\u00f3n de colores globales = \u00ab{}\u00bb color de fondo del bot\u00f3n__hover_enabled = \u00abactivado\u00bb color de fondo del bot\u00f3n__hover = \u00ab#8fd2ed\u00bb color del borde del bot\u00f3n__hover_enabled = \u00abactivado\u00bb]<\/p>\n<h2>Inscribirse<\/h2>\n<h2>Para nuestro<\/h2>\n<h2>\u00a1Actualizaciones!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dDonar ahora\u201d admin_label=\u201d\u00a1Juntos encontraremos la cura!\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d bot\u00f3n_bg_color__hover=\u201d#8fd2ed\u201d bot\u00f3n_border_color__hover_enabled=\u201don\u201d]<\/p>\n<h2>Juntos, nosotros<\/h2>\n<h2><em>VOLUNTAD<\/em><\/h2>\n<h2>\u00a1Encuentra la cura!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column tipo=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d Informaci\u00f3n global de colores = &quot;{}&quot; relleno_personalizado__hover = &quot;|||&quot;][et_pb_image src = &quot;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png&quot; t\u00edtulo = &quot;Franja 2025 para pie de p\u00e1gina web sin a\u00f1os&quot; _builder_version = &quot;4.27.4&quot; _module_preset = &quot;predeterminado&quot; margen_personalizado = &quot;35px||||falso|falso] Informaci\u00f3n global de colores = &quot;{}&quot;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n para la Investigaci\u00f3n de la Progeria ha realizado una amplia investigaci\u00f3n para crear conciencia en todo el mundo. Obtenga m\u00e1s informaci\u00f3n a trav\u00e9s de nuestra hoja informativa r\u00e1pida.<\/p>","protected":false},"author":1,"featured_media":638,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<p>[vc_row][vc_column][vc_custom_heading text=\"Progeria Quick Facts\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\" link=\"url:https%3A%2F%2Fwww.progeriaresearch.org%2Fwp-content%2Fuploads%2F2017%2F02%2FPRF-QUICKFACTS-as-of-July-1.pdf||\"][vc_column_text]<\/p><p style=\"text-align: left;\" align=\"center\"><strong><img class=\"alignnone size-full wp-image-1469\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2017\/04\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/3REVISED-PRF-QUICKFACTS-as-of-April-1-2019.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">QUICK FACTS<\/a><\/strong><\/p><p style=\"text-align: left;\" align=\"center\"><strong>MISSION: <\/strong>To Discover Treatments and the Cure for Hutchinson-Gilford Progeria Syndrome and its Aging-related Disorders, Including Heart Disease.<\/p><p><strong>PRF BY THE NUMBERS\u00a0<\/strong>as of April 1, 2019<\/p><ul><li>Identified children living with Progeria: 157* in 49 countries<\/li><li>PRF-sponsored Progeria Clinical Drug Trials: 5<\/li><li>Grants funded: 70, totaling $7.7 million<\/li><li>Cell lines in the PRF Cell & Tissue Bank: 212<\/li><li>Children in PRF\u2019s Medical & Research Database:\u00a0 178<\/li><li>International Scientific Meetings on Progeria: 11<\/li><li>Number of languages into which PRF\u2019s program and medical care materials are translated: 38<\/li><\/ul><p>*Includes 37 children in the Progeroid Laminopathy category who have\u00a0a mutation in the Lamin pathway, but do not produce progerin.[\/vc_column_text][vc_column_text]<\/p><h1>What is Progeria?<\/h1><p>Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition of accelerated aging in children. Children with Progeria die of the same heart disease that affects millions of normally aging adults (arteriosclerosis), but at an average age of just 14 years. Remarkably, their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.[\/vc_column_text][vc_column_text]<\/p><h1>About PRF<\/h1><p>The Progeria Research Foundation (PRF) was established in 1999 by\u00a0<a href=\"mailto:lgordon@progeriaresearch.org\">Drs. Leslie Gordon<\/a> and Scott Berns,\u00a0the parents of a child with Progeria,\u00a0along with many dedicated friends and family who saw the need for a medical research resource for the doctors, patients, and families of those with Progeria.\u00a0 Since that time, PRF has been the driving force behind the Progeria gene discovery and the first-ever Progeria drug treatment. PRF has developed programs and services to aid those affected by Progeria and the scientists who conduct Progeria research.\u00a0 Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria. PRF is hailed as a prime example of a successful translational research organization, moving from creation, to gene discovery, to first-ever drug treatment in just 13 years.[\/vc_column_text][vc_column_text]<\/p><h1>Total Dollars Raised<\/h1><p style=\"text-align: left;\" align=\"center\"><em>1999 through December 31, 2018<\/em>: <strong>$29,821,446<\/strong><\/p><p>More than 80% of PRF\u2019s annual expenses are consistently dedicated to its programs and services - one factor in our achieving a coveted 4-star rating from Charity Navigator five years in a row.<\/p><p>The support we have received made the Progeria gene discovery, the Progeria clinical trials and all of our other extraordinary progress possible.\u00a0 With the help of current and new supporters, we <em>will<\/em> win this race against time and find treatments and the cure for these special children. Moreover, Progeria treatment discoveries may also help millions with heart disease and the entire aging population.[\/vc_column_text][vc_column_text css=\".vc_custom_1549556944835{background-color: #ffffff !important;}\"]<\/p><h1>PRF\u2019S PROGRAMS & SERVICES<\/h1><ul><li><strong>First-Ever Progeria <a href=\"https:\/\/www.progeriaresearch.org\/clinical-trials\/\">Clinical Drug Trials<\/a><\/strong> <strong>and Treatment<\/strong><strong>:<\/strong>\u00a0 PRF-Sponsored Clinical Drug Trials bring children from around the world for promising treatments that may help to improve disease and extend the lives of children with Progeria. \u00a0<i>In 2012, history was made with the discovery that lonafarnib, a farnesyltransferase inhibitor, or FTI, is the first-ever treatment for Progeria, improving many aspects of the disease including the vital vascular system . More recent studies conclude that lonafarnib extends estimated lifespan. <\/i>In 2016, PRF initiated a two-drug trial, adding Everolimus, with the hope that the two drugs together will be even more effective than lonafarnib alone.\u00a0<i>These are remarkable steps forward in the pursuit of a cure.\u00a0<\/i><\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/international-progeria-registry\/\"><strong>International Progeria Registry<\/strong>\u00a0<\/a> maintains centralized information on children and families living with Progeria.\u00a0 This assures rapid distribution of any new information that may benefit the children.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/cell-and-tissue-bank\/\">Cell & Tissue Bank:<\/a> <\/strong>PRF\u2019s Bank provides researchers with genetic and biological material from Progeria patients and their families so research on Progeria and other aging-related diseases can be performed to bring us closer to the cure.\u00a0 PRF has collected an impressive 212 cell lines from affected children and their family members worldwide including 10 Induced Pluripotent Stem Cell (iPSC) lines.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/medical-database\/\">Medical & Research Database:<\/a> <\/strong>The Database is a centralized collection of medical information from Progeria patients worldwide.\u00a0 The data is rigorously analyzed to help us understand more about Progeria and devise treatment recommendations. In 2010, this analysis contributed to PRF\u2019s comprehensive healthcare Handbook on Progeria aimed at optimizing quality of life. The Handbook is available in English, Spanish and Portuguese, Russian & Italian.<\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/the-prf-diagnostic-testing-program\/\"><strong>Diagnostic Testing<\/strong>:<\/a> This program was developed in the wake of the 2003 gene discovery so that children, their families and medical caretakers can get a definitive, scientific diagnosis.\u00a0 This can translate into earlier diagnosis, fewer misdiagnoses and early medical intervention to ensure a better quality of life for the children.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/scientific_meetings\/\">Scientific Workshops on Progeria:<\/a> <\/strong>PRF has organized 12 scientific conferences that have brought together scientists and clinicians from all over the world to share their expertise and cutting edge scientific data. \u00a0These workshops foster collaboration in the fight against this devastating disease. \u00a0The\u00a0next meeting is September 20-22, 2018 in Boston, MA.<\/li><\/ul><ul><li><a href=\"https:\/\/www.progeriaresearch.org\/grants-funded\/\"><strong>Research Grants:<\/strong><\/a>\u00a0Through peer review by our volunteer Medical Research Committee, PRF has funded projects throughout the world that have led to important discoveries about Progeria, heart disease and aging. PRF\u2019s research program has been updated as of September 2018 to reflect current research needs within the fields of Progeria, aging and heart disease.<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/scientific-publications\/\">Publications and Research:<\/a> <\/strong>Both clinical and basic scientists have utilized the PRF grants, cells and tissues, and database; their discoveries are published in top-notch scientific journals.\u00a0 The average annual number of scientific publications on Progeria since 2002 is more than 20 times that of the previous 50 years!<\/li><\/ul><ul><li><strong><a href=\"https:\/\/www.progeriaresearch.org\/translators-needed\/\">PRF Translation Program:<\/a> <\/strong><strong><em>In touch with the world<\/em><\/strong>.\u00a0 With a prominent global presence, PRF eliminates barriers to communication for patients and their families, from around the world.\u00a0 This initiative has succeeded in translating PRF program and medical care materials into 38 languages.<\/li><\/ul><ul><li><strong>Public Awareness:<\/strong>\u00a0progeriaresearch.org provides access to the latest information on Progeria research and support for families. \u00a0Through <strong><a href=\"https:\/\/www.facebook.com\/ProgeriaResearch\">Facebook<\/a>, <a href=\"https:\/\/twitter.com\/Progeria\">Twitter<\/a><\/strong> and other mediums, PRF\u2019s direct social media reach is over 1 million. PRF\u2019s story has appeared on CNN, ABC News, Primetime, Dateline, The Katie Couric Show, and The Today Show, in Time and People magazines, The New York Times, The Wall Street Journal and many other widely-read media outlets. In addition, the award-winning 2013 HBO film <a href=\"https:\/\/www.progeriaresearch.org\/life-according-to-sam\/\"><strong><em>Life According to Sam<\/em><\/strong><\/a>\u00a0has raised awareness in a unique and inspiring way.\u00a0\u00a0PRF also manages\u00a0<strong><a href=\"https:\/\/www.findtheother150.org\/\">Find the Other 150<\/a><\/strong>,\u00a0a global awareness campaign to find children with Progeria worldwide, so they can get the unique help they need.<\/li><\/ul><p>[\/vc_column_text][vc_column_text]<\/p><h1>WHO\u2019S WHO AT PRF?<\/h1><p><strong><a href=\"mailto:agordon@progeriaresearch.org\">Audrey Gordon, Esq., President and Executive <b>Director<\/b><\/a><br \/><\/strong>Working closely with the Board of Directors, officers, staff, and volunteers, Ms. Gordon is responsible for day-to-day management and for ensuring The Progeria Research Foundation's financial growth and program development.<\/p><p><a href=\"mailto:Leslie_Gordon@brown.edu\"><strong>Leslie B. Gordon, MD, PhD, Medical Director, Co-Founder<\/strong><\/a><br \/>Dr. Gordon co-founded PRF with friends and family after her son, Sam, was diagnosed with Progeria. Dr. Gordon oversees PRF\u2019s research-related programs, and is a co-chair for the Progeria clinical drug trials.\u00a0 She is an Associate Professor of Pediatrics Research at the Warren Alpert Medical School of Brown University and Hasbro Children\u2019s Hospital in Providence, RI, and a Staff Scientist at Boston Children\u2019s Hospital and Harvard Medical School.<\/p><p><a href=\"mailto:sberns@progeriaresearch.org\"><strong>Scott D. Berns, MD, MPH, FAAP, PRF Chairman of the Board, Co-Founder<\/strong><\/a><br \/>Dr. Berns, Sam\u2019s father, is a co-founder of The Progeria Research Foundation and serves as Chairman of the Board.\u00a0 He is a Board Certified Pediatrician and Clinical Professor of Pediatrics at the Alpert Medical School of Brown University. He is also President and CEO of the National Institute for Children\u2019s Health Quality, an independent, nonprofit organization working to improve children\u2019s health.<\/p><p><b>Meghan Waldron, PRF\u2019s Youth Ambassador<br \/><\/b>Meghan serves as a spokesperson for PRF, from the perspective of a youth with Progeria. Accomplished cellist and violinist, high school cross country and track team athlete, published poet \u2013 Meghan is a talented and busy 18-year-old living in Massachusetts.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-732","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Quick Facts | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"The Progeria Research Foundation has done extensive research to bring awareness across the globe. 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