{"id":77034,"date":"2017-06-21T00:00:00","date_gmt":"2017-06-20T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/la-nova-pagina-web-de-la-chiari-scoliosis-syringomyelia-foundation-esta-en-linia\/"},"modified":"2026-01-22T09:18:21","modified_gmt":"2026-01-22T08:18:21","slug":"nova-pagina-web-chiari-scoliosis-syringomyelia-foundation-esta-linia","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/ca\/nova-pagina-web-chiari-scoliosis-syringomyelia-foundation-esta-linia\/","title":{"rendered":"La nova p\u00e0gina web de la Chiari &#038; Scoliosis &#038; Syringomyelia Foundation est\u00e0 en l\u00ednia"},"content":{"rendered":"<p class=\"text-muted aniview centerTXT\">Publicat per\u00a0<a title=\"Entrades de ICSEB\" href=\"https:\/\/institutchiaribcn.com\/ca\/author\/anoop\/\" rel=\"author\">ICSEB<\/a>\u00a0el 21 juny, 2017<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/chiarifoundationbcn.com\/\" target=\"_blank\" rel=\"noopener\"><img decoding=\"async\" class=\"img-rounded img-responsive text-wrap\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/Web-CSSf.jpg\" alt=\"Chiari Foundation Barcelona\" \/><\/a><\/p>\n<p>Des de l\u2019Institut Chiari &amp; Siringomi\u00e8lia &amp; Escoliosis de Barcelona (ICSEB), ens complau anunciar-vos la publicaci\u00f3 de la nova p\u00e0gina web de la\u00a0<strong><a href=\"https:\/\/chiarifoundationbcn.com\/\" target=\"_blank\" rel=\"noopener\">Chiari &amp; Scoliosis &amp; Syringomyelia Foundation (CSSf)<\/a>.<\/strong><\/p>\n<p>Aquesta nova p\u00e0gina compta amb un disseny totalment renovat i din\u00e0mic que permet a l\u2019usuari gaudir d\u2019una navegaci\u00f3 m\u00e9s r\u00e0pida i senzilla, acompanyant-lo a trav\u00e9s de les seves p\u00e0gines i continguts.<\/p>\n<p>A la portada, hi trobarem els tres objectius que defineixen la missi\u00f3 de la Fundaci\u00f3: la investigaci\u00f3, la doc\u00e8ncia i l\u2019ajuda social. Aquests es veuen tradu\u00efts en el recolzament a tota persona, societat o iniciativa que ajuda als pacients afectats per la Malaltia del Filum, en el respecte dels seus valors humans, \u00e8tics i cient\u00edfics.<\/p>\n<p>Amb l\u2019esperan\u00e7a que aquesta nova p\u00e0gina web contribueixi en l\u2019ajuda als pacients diagnosticats de la S\u00edndrome d\u2019Arnold Chiari I, la Siringomi\u00e8lia i l\u2019Escoliosi idiop\u00e0tiques i de totes les altres patologies relacionades amb la Malaltia del Filum, els convidem a anar-la coneixent i, si ho desitgen, recolzar la seva missi\u00f3.<\/p>\n<hr \/>\n<h3>Carta del president de la Chiari &amp; Scoliosis &amp; Syringomyelia Foundation<\/h3>\n<p>&nbsp;<\/p>\n<div class=\"col-md-4\" align=\"center\"><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/DrRoyo.jpg\"><img fetchpriority=\"high\" decoding=\"async\" class=\"img-rounded img-responsive\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2017\/06\/DrRoyo.jpg\" alt=\"\" width=\"225\" height=\"300\" \/><\/a><\/div>\n<p>A mitjans del anys setanta, vaig comen\u00e7ar la meva traject\u00f2ria en el m\u00f3n de la investigaci\u00f3 centrada, inicialment, en la causa de la Siringomi\u00e8lia idiop\u00e0tica, despr\u00e9s en la S\u00edndrome d\u2019Arnold Chiari I i, m\u00e9s tard, en l\u2019Escoliosi idiop\u00e0tica. Vaig arribar a la conclusi\u00f3 que l\u2019origen d\u2019aquestes malalties, i d\u2019altres que hi estan associades, \u00e9s una tracci\u00f3 an\u00f2mala de la medul\u00b7la espinal, provocada per un filum terminale cong\u00e8nitament m\u00e9s tens del que \u00e9s habitual.<\/p>\n<p>A partir de la meva tesi doctoral,\u00a0<em>Aportaci\u00f3 a l\u2019etiologia de la Siringomi\u00e8lia\u00a0<\/em>(1992), vaig posar els fonaments te\u00f2rics per a un nou tractament d\u2019aquestes patologies, mitjan\u00e7ant la secci\u00f3 quir\u00fargica del Filum Terminale. El resultat va ser\u00a0<strong>la creaci\u00f3 del m\u00e8tode sanitari Filum System<sup>\u00ae<\/sup>,\u00a0<\/strong>un sistema protocol\u00b7lari dissenyat pel diagn\u00f2stic i el tractament d\u2019<strong>un nou concepte de patologia, la Malaltia del Filum.\u00a0<\/strong>L\u2019Institut Chiari &amp; Siringomielia &amp; Escoliosis \u00e9s qui s\u2019ocupa de la seva difusi\u00f3 i aplicaci\u00f3.<\/p>\n<p>La Malaltia del Filum, que existeix des dels inicis dels \u00e9ssers humans com a vertebrats, est\u00e0 present en una bona part de la poblaci\u00f3 mundial; arribant a ser, possiblement, la Malaltia m\u00e9s freq\u00fcent, per\u00f2 a la vegada, la m\u00e9s desconeguda pels malalts. Aix\u00f2 es deu a que la majoria de les seves manifestacions no es valoren o s\u00f3n considerades poc transcendents, tant per part dels malalts com pels professionals sanitaris.<\/p>\n<p>Una vegada descrita la Malaltia del Filum, i la seva forma de tractar-la, em vaig preguntar: De qu\u00e8 han servit els esfor\u00e7os en descobrir una nova malaltia i el seu tractament, si nom\u00e9s quedar\u00e0 com a una curiositat cient\u00edfica en una tesi doctoral o en una publicaci\u00f3 m\u00e8dica? Aix\u00ed doncs, vaig haver d\u2019assumir una nova tasca: la d\u2019arribar a diagnosticar a tots aquells que estiguessin afectats per la Malaltia del Filum i poder-los oferir la millor soluci\u00f3.<\/p>\n<p>A m\u00e9s a m\u00e9s, quedaven investigacions pendents per a trobar altres pautes i altres tractaments, entre elles: les gen\u00e8tiques, les millores en t\u00e8cniques quir\u00fargiques i les noves pautes de neuro-rehabilitaci\u00f3. Tamb\u00e9 s\u2019havien de guardar esfor\u00e7os per a la difusi\u00f3 a tots els nivells: tant de coneixement cient\u00edfic com de social; sense oblidar ni l\u2019ajuda a les precarietats personals dels malalts ni a les del seu entorn. Vaig considerar que el millor instrument per a contribuir a aquests prop\u00f2sits era fundar la\u00a0<strong>Chiari &amp; Scoliosis &amp; Syringomyelia Fondation (CSSf)<\/strong>\u00a0al 2008.<\/p>\n<p>Gr\u00e0cies al recolzament de la CSSf, l\u2019ICSEB ha aconseguit ser el primer institut neuro-quir\u00fargic en obtenir la m\u00e0xima acreditaci\u00f3 en I+D+i. Ha contribu\u00eft a la constituci\u00f3 de la Filum Academy Barcelona<sup>\u00ae<\/sup>\u00a0al 2014, on s\u2019hi han impartit cursos de formaci\u00f3 m\u00e8dica i sanit\u00e0ria sobre la Malaltia del Filum, totalment gratu\u00efts. Ha promogut i sufragat reunions per a pacients i professionals de la sanitat en quatre pa\u00efsos europeus. Ha ajudat i sufragat tractaments a pacients sense mitjans econ\u00f2mics, incapa\u00e7os d\u2019aconseguir-ho per ells mateixos. Ha constitu\u00eft una estructura social transparent i honesta per patrons del m\u00e9s alt nivell cient\u00edfic i hum\u00e0, que han tutelat amb dignitat el compliment\u00a0<strong>dels tres objectius de la CSSf: la investigaci\u00f3, la doc\u00e8ncia i l\u2019ajuda social.<\/strong><\/p>\n<p>A trav\u00e9s de la CSSf, ens proposem seguir endavant amb la nostra missi\u00f3, centrats fermament en el benestar del pacient i en el progr\u00e9s cient\u00edfic.<\/p>\n<p>Per aquesta ra\u00f3, recolzarem a tota persona, societat o iniciativa que ajudi als pacients afectats d\u2019aquestes malalties, sempre que respecti els nostres valors humans, \u00e8tics i cient\u00edfics.<\/p>\n<p><strong>Dr. Miguel B. Royo Salvador<\/strong><br \/>\n<strong>Fundador i President de la Chiari &amp; Scoliosis &amp; Syrigomyelia Foundation<\/strong><\/p>\n","protected":false},"featured_media":77035,"template":"","tipos-de-comunicacion":[509],"class_list":["post-77034","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-noticies"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La nova p\u00e0gina web de la CSSf est\u00e0 en l\u00ednia | ICSEB<\/title>\n<meta name=\"description\" content=\"Des de l\u2019Institut Chiari &amp; Siringomi\u00e8lia &amp; Escoliosis de Barcelona (ICSEB), ens complau anunciar-vos la publicaci\u00f3 de la nova... \u00a0 Llegir m\u00e9s \u2192\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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