{"id":2341,"date":"2018-11-18T21:09:52","date_gmt":"2018-11-19T03:09:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2341"},"modified":"2018-11-18T21:09:52","modified_gmt":"2018-11-19T03:09:52","slug":"lgmd-organization-gfb-onlus","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"ORGANIZACI\u00d3N: GFB ONLUS"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>: GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS)<\/p>\n

P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/p>\n

EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n

Nos centramos en la distrofia muscular de cinturas tipo 2E (LGMD2E)<\/p>\n

SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n

En nuestra p\u00e1gina web recogemos informaci\u00f3n relativa a personas afectadas por Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F, de acuerdo con la Ley de Protecci\u00f3n de Datos. Nuestro primer objetivo es elaborar datos estad\u00edsticos y en segunda instancia nos gustar\u00eda crear un registro de pacientes de sarcoglucanopat\u00edas.<\/p>\n

Aqu\u00ed puede consultar nuestras estad\u00edsticas de pacientes:
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

GFB cuenta actualmente con un total de 403 pacientes afectados de Sarcoglucanopat\u00eda (LGMD2C -2D - 2E -2F). Invitamos a las personas que tengan informaci\u00f3n adicional que compartir, a que nos la hagan llegar a trav\u00e9s de info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n

\u00bfEs su organizaci\u00f3n una organizaci\u00f3n sin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

S\u00ed, somos una organizaci\u00f3n sin \u00e1nimo de lucro. El 27 de febrero de 2013 el GFB Onlus se cre\u00f3 oficialmente en Italia como organizaci\u00f3n de voluntariado, inscrita en la secci\u00f3n provincial del registro regional de organizaciones de voluntariado de Lombard\u00eda n. SO-81. En 2014 tambi\u00e9n fue incluida en el registro regional de las Asociaciones de Solidaridad Familiar n. 947.<\/p>\n

QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n

En los a\u00f1os que hemos experimentado la enfermedad de nuestros hijos, darse cuenta de que no hab\u00eda estudios cient\u00edficos precisos y enfoques terap\u00e9uticos dirigidos para esta enfermedad (hasta 2012). Nos quedamos completamente solos y adem\u00e1s, no hab\u00eda asociaciones para la Lgmd2E.<\/p>\n

CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

El Gfb Onlus se cre\u00f3 para financiar proyectos de investigaci\u00f3n destinados a tratar la enfermedad. Tambi\u00e9n quiere ser una forma de mantenernos\/teneros mejor informados sobre info\/noticias no f\u00e1ciles de encontrar as\u00ed como de las actividades de investigaci\u00f3n espec\u00edficas m\u00e1s actualizadas para esta enfermedad en particular. Nuestra misi\u00f3n es representar a las personas con Lgmd2E, hacia las instituciones, organizaciones de investigaci\u00f3n, otras asociaciones, a los pacientes. Este papel es mantenido s\u00f3lo por nosotros hasta ahora porque no existen otros grupos con nuestro mismo prop\u00f3sito - ni en Italia ni en el extranjero. Este sitio web y su grupo de auto-ayuda fueron creados a partir del deseo de entrar en contacto con otras familias afectadas por esta enfermedad, para compartir los diversos aspectos de la vida cotidiana con esta enfermedad, as\u00ed como los aspectos cl\u00ednicos, legales, log\u00edsticos, organizativos relacionados con la investigaci\u00f3n cient\u00edfica y el uso de diversas ayudas. Nuestra intenci\u00f3n es realizar una primera recogida de datos sobre estos pacientes, de cara a un futuro registro de pacientes y ensayos cl\u00ednicos espec\u00edficos.<\/p>\n

QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

2012: Desde el mes de agosto de 2012 las familias de GFB han decidido iniciar las primeras financiaciones al proyecto de terapia g\u00e9nica LGMD2E en Columbus Ohio por el prof. J. Mendell. A d\u00eda de hoy se han abonado cinco pagos por un total de $ 1.300.000. 2017: Nace la empresa Myonexus Therapeutics y GFB ONLUS entra a formar parte de la misma. El objetivo de Myonexus Therapeutics Company, es desarrollar la terapia g\u00e9nica para la distrofia muscular de cinturas (LGMD) tipos 2B, 2C, 2D, 2E y 2L. http:\/\/myonexustx.com\/ 2018: GFB Onlus particip\u00f3 en la firma del acuerdo entre Sarepta y Myonexus, dos empresas biotecnol\u00f3gicas con sede en Estados Unidos. Otras de nuestras actividades son la organizaci\u00f3n de viajes a la monta\u00f1a con sillas de trekking y otras actividades deportivas (sky) y recreativas para personas con discapacidad, organizaci\u00f3n de encuentros anuales de las familias de GFB ONLUS, y servicios de transporte para personas con discapacidad, tambi\u00e9n a trav\u00e9s de convenios con organismos p\u00fablicos, organizaci\u00f3n de congreso cient\u00edfico internacional para LGMD2E y otras sarcoglicanopat\u00edas y apoyo psicol\u00f3gico a personas con discapacidad.<\/p>\n

DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n

Haber financiado la fase precl\u00ednica del proyecto de terapia g\u00e9nica Lgmd2e coordinado por el Prof. J. Mendell en Columbus Ohio USA ($ 1.300.000), haber participado a Myonexus Therapeutics y acuerdo entre Sarepta y Myonexus.<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n

Estamos desarrollando grandes conexiones en esta \u00e1rea y esperamos construir un registro que nos ayude cuando los ensayos cl\u00ednicos est\u00e9n listos para ponerse en marcha.<\/p>\n

C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Nuestro sitio web tendr\u00e1 informaci\u00f3n para ponerse en contacto con nosotros y, eventualmente, para hacer donaciones deducibles de impuestos.<\/p>\n

CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

P\u00f3ngase en contacto con nosotros por correo electr\u00f3nico info@beta-sarcoglicanopatie.it<\/a> . P\u00f3ngase en contacto con nosotros en cualquier momento. Tambi\u00e9n puede enviarnos un mensaje a trav\u00e9s de Facebook o Twitter.<\/p>\n

\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n

Esperamos tener \u00e9xito en la consecuci\u00f3n de curas y tratamientos para LGMD2E y otros subtipos de lgmd.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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