{"id":2111,"date":"2018-07-26T10:25:01","date_gmt":"2018-07-26T15:25:01","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2111"},"modified":"2018-07-26T10:25:01","modified_gmt":"2018-07-26T15:25:01","slug":"organization-jain-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2b\/2018\/07\/26\/organization-jain-foundation\/","title":{"rendered":"ORGANIZACI\u00d3N: Fundaci\u00f3n Jain\u00a0"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>: Fundaci\u00f3n Jain\u00a0\u00a0\u00a0<\/p>\n

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

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> www.facebook.com\/JainFoundation\/<\/a><\/p>\n

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

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

Disferlinopat\u00eda (LGMD2B\/Miyoshi miopat\u00eda tipo 1), que est\u00e1n causadas por mutaciones en el gen de la disferlina.<\/p>\n

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

S\u00ed, tenemos un registro para pacientes con disferlinopat\u00eda. Animamos a los pacientes a que se pongan en contacto con nosotros en patients@jain-foundation.org; encontrar\u00e1 m\u00e1s informaci\u00f3n sobre el registro en https:\/\/www.jain-foundation.org\/patient-physician-resources\/patient-registration<\/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

Estamos constituidos como fundaci\u00f3n privada sin \u00e1nimo de lucro en EE.UU. Como tal, no solicitamos donativos al p\u00fablico.<\/p>\n

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

Comenzamos a ra\u00edz del diagn\u00f3stico de disferlinopat\u00eda al hijo de nuestro fundador. Tras el contacto de la familia con otros pacientes e investigadores, en 2005 se cre\u00f3 la Fundaci\u00f3n Jain.<\/p>\n

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

Desarrollar tratamientos y curas para la disferlinopat\u00eda.<\/p>\n

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

Nos centramos principalmente en la investigaci\u00f3n y el desarrollo de tratamientos, m\u00e1s que en los servicios a los pacientes. Sin embargo, no es posible probar tratamientos o determinar medidas de resultados para ensayos cl\u00ednicos sin pacientes, y el diagn\u00f3stico sigue siendo un gran reto para todas las formas de LGMD. Por este motivo, mantenemos un registro de pacientes y ofrecemos servicios de diagn\u00f3stico a pacientes con probabilidad de padecer disferlinopat\u00eda para ayudar a aclarar su diagn\u00f3stico y permitirles el acceso a ensayos cl\u00ednicos y, con el tiempo, a tratamientos.<\/p>\n

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

Acabamos de finalizar un estudio cl\u00ednico de varios a\u00f1os de duraci\u00f3n, The Clinical Outcome Study of Dysferlinopathy, en el que han participado unos 200 pacientes de 15 centros cl\u00ednicos de ocho pa\u00edses. Este estudio ha proporcionado una historia natural definitiva de la disferlinopat\u00eda, ha identificado las mejores medidas de resultados (qu\u00e9 se medir\u00e1, en cu\u00e1ntas personas, durante cu\u00e1nto tiempo) que se utilizar\u00e1n en los ensayos cl\u00ednicos de la disferlinopat\u00eda para determinar si un tratamiento es eficaz. Este estudio est\u00e1 a punto de pasar a la siguiente fase, en la que se confirmar\u00e1n nuestros hallazgos, podr\u00e1n participar otros 100 pacientes y participar\u00e1n cuatro nuevos centros m\u00e9dicos.<\/p>\n

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

Para el tratamiento de la disferlinopat\u00eda estamos estudiando varios enfoques, como la terapia g\u00e9nica, la reutilizaci\u00f3n de f\u00e1rmacos ya comercializados para otras enfermedades y el desarrollo de nuevos medicamentos. En cuanto a la terapia g\u00e9nica, colaboramos estrechamente con Myonexus, que est\u00e1 desarrollando una terapia g\u00e9nica AAV de \"vector dual\" para la disferlinopat\u00eda. Adem\u00e1s, hasta ahora hemos probado m\u00e1s de 15 tratamientos farmacol\u00f3gicos candidatos en estudios precl\u00ednicos en ratones con disferlinopat\u00eda y siempre estamos explorando y probando nuevas opciones de tratamiento... Esperamos que uno o varios de estos tratamientos sean beneficiosos para la disferlinopat\u00eda.<\/p>\n

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

Como no recaudamos dinero del p\u00fablico, el apoyo que buscamos de los pacientes y otras personas es que se unan al Registro de Disferlina, consideren participar en estudios cl\u00ednicos, aumenten la concienciaci\u00f3n sobre esta enfermedad y se comprometan con la comunidad. Cada vez est\u00e1 m\u00e1s claro que en las enfermedades raras, la existencia de una organizaci\u00f3n de defensa fuerte y una comunidad de pacientes y familiares es fundamental para desarrollar tratamientos. La Fundaci\u00f3n Jain puede proporcionar la organizaci\u00f3n, \u00a1pero necesitamos su apoyo para construir una comunidad fuerte!<\/p>\n

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

Los pacientes diagnosticados o sospechosos de padecer una disferlinopat\u00eda pueden ponerse en contacto con nosotros en patients@jain-foundation.org. Adem\u00e1s, animamos a la gente a visitar nuestro sitio web, que contiene mucha informaci\u00f3n sobre la disferlinopat\u00eda y nuestros programas de investigaci\u00f3n.<\/p>\n

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

Nos centramos en derribar las barreras que se interponen en el camino hacia nuestro objetivo de desarrollar tratamientos y curas. Esto incluye colmar lagunas en el conocimiento cient\u00edfico que puedan ayudarnos a identificar posibles tratamientos, adquirir un mejor conocimiento cl\u00ednico de la enfermedad para poder realizar ensayos cl\u00ednicos con \u00e9xito, mantener una comunidad de pacientes comprometida utilizando el Registro de Disferlina para que los ensayos puedan poblarse de manera eficiente y realizar pruebas precl\u00ednicas y cl\u00ednicas de terapias prospectivas.<\/p>\n

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

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