{"id":292,"date":"2026-07-07T19:35:27","date_gmt":"2026-07-07T17:35:27","guid":{"rendered":"https:\/\/corfoundation.org\/families\/"},"modified":"2026-09-07T16:08:21","modified_gmt":"2026-09-07T14:08:21","slug":"families","status":"publish","type":"page","link":"https:\/\/corfoundation.org\/ca\/families\/","title":{"rendered":"Fam\u00edlies"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ fullwidth=\u00bbon\u00bb _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″][et_pb_fullwidth_slider _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″ background_enable_image=\u00bboff\u00bb border_radii_image_last_edited=\u00bbon|desktop\u00bb][et_pb_slide heading=\u00bbCom col\u00b7laborem amb les fam\u00edlies?\u00bb _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb background_image=\u00bbhttps:\/\/corfoundation.org\/wp-content\/uploads\/2026\/07\/apoyo-familias-ACTL6B-oscuro-scaled.jpg\u00bb background_enable_image=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb sticky_transition=\u00bbon\u00bb]<\/p>\n

Unim les fam\u00edlies afectades i la ci\u00e8ncia perqu\u00e8, sense totes dues, \u00e9s impossible trobar una soluci\u00f3 als desafiaments que sorgeixen pel cam\u00ed. Treballem dia i nit per resoldre el trencaclosques del complex nBAF unint ci\u00e8ncia i fam\u00edlia per avan\u00e7ar en la mateixa direcci\u00f3. <\/p>\n

[\/et_pb_slide][\/et_pb_fullwidth_slider][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Tenim un objectiu clar<\/h2>\n

Fem participar les fam\u00edlies de tots els aven\u00e7os cient\u00edfics per a la millora de la qualitat de vida de les persones afectades per les mutacions del complex nBAF i del seu entorn.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Com ho fem?<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.7″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

I. Promoci\u00f3 de la Recerca Biom\u00e8dica Dirigida:<\/h3>\n

Finan\u00e7ament directe a investigadors i institucions centrats a desxifrar els mecanismes moleculars (com les disfuncions en els subdominis de la prote\u00efna que interactuen amb l’actina) i a desenvolupar ter\u00e0pies avan\u00e7ades per a l’ACTL6B i patologies associades.<\/p>\n

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II. Acc\u00e9s a Ter\u00e0pies i Atenci\u00f3 Integral: <\/h3>\n

Cobertura de les necessitats no satisfetes del pacient, facilitant intervencions sanit\u00e0ries, ter\u00e0pies rehabilitadores f\u00edsiques i cognitives essencials per pal\u00b7liar els s\u00edmptomes motors i del neurodesenvolupament, i prestant suport continu a les fam\u00edlies.<\/p>\n

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III. Innovaci\u00f3 i Salut Digital: <\/h3>\n

Desenvolupament de solucions tecnol\u00f2giques per optimitzar el seguiment cl\u00ednic d’aquests pacients complexos, connectar la comunitat global d’afectats per BAFopaties i democratitzar l’acc\u00e9s a la informaci\u00f3 m\u00e8dica.<\/p>\n

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IV. Conscienciaci\u00f3 i Aliances Estrat\u00e8giques: <\/h3>\n

Creaci\u00f3 de consorcis internacionals amb hospitals, universitats i el sector biofarmac\u00e8utic per maximitzar l’impacte de la recerca en l’ACTL6B.<\/p>\n

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Uneix-te a l’evoluci\u00f3 cient\u00edfica per al tractament<\/h2>\n

Necessitem la participaci\u00f3 de les fam\u00edlies per reunir-les de manera formal i, amb la seva col\u00b7laboraci\u00f3, poder desenvolupar tot el projecte cient\u00edfic i cl\u00ednic que permetr\u00e0, en pocs anys, aplicar una ter\u00e0pia amb la factibilitat de curar els primers casos.<\/p>\n

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Unim les fam\u00edlies afectades i la ci\u00e8ncia perqu\u00e8, sense totes dues, \u00e9s impossible trobar una soluci\u00f3 als desafiaments que sorgeixen pel cam\u00ed. Treballem dia i nit per resoldre el trencaclosques del complex nBAF unint ci\u00e8ncia i fam\u00edlia per avan\u00e7ar en la mateixa direcci\u00f3. Tenim un objectiu clar Fem participar les fam\u00edlies de tots els aven\u00e7os […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","inline_featured_image":false,"footnotes":""},"class_list":["post-292","page","type-page","status-publish","hentry"],"yoast_head":"\nFam\u00edlies - COR Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/corfoundation.org\/ca\/families\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Fam\u00edlies - COR Foundation\" \/>\n<meta property=\"og:description\" content=\"Unim les fam\u00edlies afectades i la ci\u00e8ncia perqu\u00e8, sense totes dues, \u00e9s impossible trobar una soluci\u00f3 als desafiaments que sorgeixen pel cam\u00ed. 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