{"id":14483,"date":"2022-02-28T11:55:45","date_gmt":"2022-02-28T10:55:45","guid":{"rendered":"https:\/\/www.fundacionisabelgemio.com\/uncategorized\/28-de-febrero-dia-mundial-de-las-enfermedades-raras-la-fundacion-isabel-gemio-lanza-un-programa-europeo-cofinanciado-erasmus-para-la-juventud-y-la-sensibilizacion"},"modified":"2022-02-28T18:29:29","modified_gmt":"2022-02-28T17:29:29","slug":"28-de-febrero-dia-mundial-de-las-enfermedades-raras-la-fundacion-isabel-gemio-lanza-un-programa-europeo-cofinanciado-erasmus-para-la-juventud-y-la-sensibilizacion","status":"publish","type":"post","link":"https:\/\/www.fundacionisabelgemio.com\/en\/eventos-en\/28-de-febrero-dia-mundial-de-las-enfermedades-raras-la-fundacion-isabel-gemio-lanza-un-programa-europeo-cofinanciado-erasmus-para-la-juventud-y-la-sensibilizacion","title":{"rendered":"28 de febrero D\u00eda Mundial de las Enfermedades Raras La Fundaci\u00f3n Isabel Gemio lanza un programa europeo cofinanciado ERASMUS+ para la juventud y la sensibilizaci\u00f3n"},"content":{"rendered":"\n\t\t<style type=\"text\/css\">\n\t\t\t#gallery-1 {\n\t\t\t\tmargin: auto;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-item {\n\t\t\t\tfloat: left;\n\t\t\t\tmargin-top: 10px;\n\t\t\t\ttext-align: center;\n\t\t\t\twidth: 50%;\n\t\t\t}\n\t\t\t#gallery-1 img {\n\t\t\t\tborder: 2px solid #cfcfcf;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-caption {\n\t\t\t\tmargin-left: 0;\n\t\t\t}\n\t\t\t\/* see gallery_shortcode() in wp-includes\/media.php *\/\n\t\t<\/style>\n\t\t<div id='gallery-1' class='gallery galleryid-14483 gallery-columns-2 gallery-size-gallery'><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon portrait'>\n\t\t\t\t<a href='https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2022\/02\/FOTO-CAROLINA-JUZDADO.jpg'><img loading=\"lazy\" decoding=\"async\" width=\"845\" height=\"684\" src=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2022\/02\/FOTO-CAROLINA-JUZDADO-845x684.jpg\" class=\"attachment-gallery size-gallery\" alt=\"\" srcset=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2022\/02\/FOTO-CAROLINA-JUZDADO-845x684.jpg 845w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2022\/02\/FOTO-CAROLINA-JUZDADO-495x400.jpg 495w\" sizes=\"auto, (max-width: 845px) 100vw, 845px\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2019\/06\/ISABEL-GEMIO-FIRMA-MI-HIJO-MI-MAESTRO.jpg'><img loading=\"lazy\" decoding=\"async\" width=\"845\" height=\"684\" src=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2019\/06\/ISABEL-GEMIO-FIRMA-MI-HIJO-MI-MAESTRO-845x684.jpg\" class=\"attachment-gallery size-gallery\" alt=\"\" srcset=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2019\/06\/ISABEL-GEMIO-FIRMA-MI-HIJO-MI-MAESTRO-845x684.jpg 845w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2019\/06\/ISABEL-GEMIO-FIRMA-MI-HIJO-MI-MAESTRO-495x400.jpg 495w\" sizes=\"auto, (max-width: 845px) 100vw, 845px\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/>\n\t\t<\/div>\n\n<p>Madrid, 28 de febrero de 2022.- La Fundaci\u00f3n Isabel Gemio presenta, con ocasi\u00f3n del d\u00eda mundial de las enfermedades raras, el lanzamiento del proyecto europeo J\u00d3VENES CON ENFERMEDADES RARAS: EL VALOR DE ENFRENTARSE A LA VIDA (YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE) cofinanciado por el programa ERASMUS+ de la Uni\u00f3n Europea que coordinar\u00e1 en los pr\u00f3ximos meses y en el que participan los siguientes socios europeos:<br \/>\nUNIAMO FEDERAZIONE ITALIANA MALATTIE RARE (Italia)<br \/>\nPARENT PROJECT PER LA RICERCA SULLA DISTROFIA MUSCOLARE \u2013 ASSOCIAZIONE DI PROMOZIONE SOCIALE (Italia)<br \/>\nASSOCIATION CHARCOT-MARIE-TOOTH ET NEUROPATHIES PERIPHERIQUES (Francia)<br \/>\nFEDERACI\u00d3N ESPA\u00d1OLA DE ENFERMEDADES NEUROMUSCULARES (ASEM) (Espa\u00f1a)<\/p>\n<p>El proyecto comienza con la publicaci\u00f3n del primer video de concienciaci\u00f3n sobre las enfermedades raras a los j\u00f3venes europeos en el canal de Instagram IGTV YOUTH WITH COURAGE.<br \/>\nhttps:\/\/www.instagram.com\/youthwithcourage\/.<\/p>\n<p>En este primer video la protagonista es Carolina Juzdado, joven afectada por la Ataxia de Friedreich y que nos cuenta su d\u00eda a d\u00eda expresando su confianza en la investigaci\u00f3n y en la ciencia que es la \u00fanica soluci\u00f3n para todos. Puedes ver el video en el siguiente enlace:\u00a0https:\/\/www.instagram.com\/p\/CaZj6Aqg299\/<\/p>\n<p>El proyecto supone la creaci\u00f3n de una red europea de fundaciones, instituciones y entidades europeas que intercambian experiencias y buenas pr\u00e1cticas, pero que tambi\u00e9n colaboran conjuntamente para crear y publicar peque\u00f1as entrevistas a j\u00f3venes con enfermedades raras que cuentan su d\u00eda a d\u00eda y ense\u00f1an a los usuarios c\u00f3mo superar sus barreras. Tambi\u00e9n se incluir\u00e1n peque\u00f1os videos de cient\u00edficos, familias que contribuyen de manera efectiva a este \u00e1mbito o personas importantes para avanzar en la investigaci\u00f3n de las enfermedades raras<\/p>\n<p>Las acciones que desarrollar\u00e1 el proyecto supondr\u00e1n el acercamiento y trabajo conjunto entre entidades de diferentes Estados europeos, que comparten sus ideas y difunden sus acciones entre el resto de la red para aportarles m\u00e1s capacidad de impacto.<\/p>\n<p>Con este proyecto conseguiremos un conjunto de recursos audiovisuales que muestren la vida de j\u00f3venes excepcionales que superan d\u00eda a d\u00eda las barreras impuestas por sus raras enfermedades, no solo reconociendo su val\u00eda, sino sirviendo de ejemplo de superaci\u00f3n a otros j\u00f3venes que padecen enfermedades raras. Este ser\u00e1 un resultado din\u00e1mico pues los j\u00f3venes que padecen enfermedades raras, podr\u00e1n crear sus propios videos convirti\u00e9ndose en parte de IGTV: YOUTH WITH COURAGE. Y el resto de los j\u00f3venes y sociedad civil podr\u00e1 comprender mejor la realidad de las personas afectadas por enfermedades raras, las personas sin diagn\u00f3stico y sus familias.<\/p>\n<p>Sobre la Fundaci\u00f3n Isabel Gemio<\/p>\n<p>La Fundaci\u00f3n Isabel Gemio tiene como objetivo contribuir a acelerar la investigaci\u00f3n de las enfermedades raras, en aquellos aspectos biol\u00f3gicos, fisiopatol\u00f3gicos, gen\u00e9ticos o terap\u00e9uticos que puedan incidir en el desarrollo y aplicaci\u00f3n de tratamientos, adem\u00e1s de fomentar la sensibilizaci\u00f3n y concienciaci\u00f3n de la sociedad sobre la realidad de estas crueles patolog\u00edas e intentar fomentar la mejora de la calidad de vida de las personas afectadas por estas enfermedades minoritarias y sus familias.<\/p>\n<p>La Fundaci\u00f3n Isabel Gemio lleva catorce a\u00f1os recaudando fondos para la investigaci\u00f3n de las enfermedades menos frecuentes, apoyando y financiando importantes proyectos de investigaci\u00f3n cient\u00edfica en estas enfermedades.<\/p>\n<p>Desde el a\u00f1o 2008 disponer de fondos de la Fundaci\u00f3n ha permitido a los grupos de investigaci\u00f3n, adem\u00e1s de desarrollar sus proyectos, avanzar en sus conocimientos, colaborar en ensayos cl\u00ednicos y estudios y haber sido seleccionados para participar en la mayor\u00eda de los ensayos de terapia g\u00e9nica y otras mol\u00e9culas de vanguardia y publicar conclusiones de sus proyectos en numerosos art\u00edculos en revistas cient\u00edficas de reconocido prestigio que pueden consultar en la web www.fundacionisabelgemio.com.<\/p>\n<p>________________________________________________________________________________________________<\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\"><strong>February 28 World Rare Disease Day The Isabel Gemio Foundation launches an ERASMUS+ co-financed European program for youth and awareness<\/strong> <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\"> <strong>Madrid, February 28, 2022.<\/strong>&#8211; The Isabel Gemio Foundation presents, on the occasion of World Rare Disease Day, the launch of the European project YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE) co-financed by the ERASMUS+ program of the European Union that it will coordinate in the coming months and in which the following European partners participate: <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">UNIAMO FEDERAZIONE ITALIANA MALATTIE RARE (Italy) <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">PARENT PROJECT PER LA RICERCA SULLA DYSTROPIA MUSCOLARE \u2013 ASSOCIAZIONE DI PROMOZIONE SOCIALE (Italy) ASSOCIATION CHARCOT-MARIE-TOOTH ET NEUROPATHIES PERIPHERIQUES (France) <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">SPANISH FEDERATION OF NEUROMUSCULAR DISEASES (ASEM) (Spain) <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">The project begins with the publication of the first rare disease awareness video for young Europeans on the IGTV YOUTH WITH COURAGE Instagram channel. https:\/\/www.instagram.com\/youthwithcourage\/. In this first video, the protagonist is Carolina Juzdado, a young woman affected by Friedreich&#8217;s Ataxia who tells us about her day-to-day life, expressing her confidence in research and science, which is the only solution for everyone. You can watch the video and follow the channel at https:\/\/www.instagram.com\/p\/CaZj6Aqg299\/<\/span><\/p>\n<p>&nbsp;<\/p>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">The project involves the creation of a European network of European foundations, institutions and entities that exchange experiences and good practices, but also collaborate together to create and publish short interviews with young people with rare diseases who tell their day-to-day lives and teach users How to overcome your barriers. Short videos of scientists, families who contribute effectively to this field or important people to advance research on rare diseases will also be included. <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">The actions that the project will involve the rapprochement and joint work between entities from different European States, which share their ideas and spread their actions among the rest of the network to provide them with greater impact capacity. With this project we will achieve a set of audiovisual resources that show the lives of exceptional young people who overcome the barriers imposed by their rare diseases every day, not only recognizing their worth, but also serving as an example of overcoming other young people who suffer from rare diseases. <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">This will be a dynamic result as young people with rare diseases will be able to create their own videos by becoming part of IGTV: YOUTH WITH COURAGE. And the rest of the young people and civil society will be able to better understand the reality of people affected by rare diseases, people without diagnosis and their families. <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">Isabel Gemio Foundation <\/span><\/p>\n<p class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\">The Isabel Gemio Foundation aims to contribute to accelerating research into rare diseases, in those biological, pathophysiological, genetic or therapeutic aspects that may affect the development and application of treatments, in addition to promoting awareness and awareness in society about the reality of these cruel pathologies and try to promote the improvement of the quality of life of the people affected by these rare diseases and their families. The Isabel Gemio Foundation has spent fourteen years raising funds for research on less frequent diseases, supporting and financing important scientific research projects on these diseases. Since 2008, having funds from the Foundation has allowed research groups, in addition to developing their projects, advancing their knowledge, collaborating in clinical trials and studies, and having been selected to participate in most gene therapy trials. and other cutting-edge molecules and publish the conclusions of their projects in numerous articles in prestigious scientific journals that can be consulted on the website www.fundacionisabelgemio.com.<\/span><\/p>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traducci\u00f3n\"><span class=\"Y2IQFc\" lang=\"en\"><a href=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-13882\" src=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right.jpg\" alt=\"\" width=\"1964\" height=\"561\" srcset=\"https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right.jpg 1964w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-300x86.jpg 300w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-768x219.jpg 768w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-1030x294.jpg 1030w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-1500x428.jpg 1500w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-705x201.jpg 705w, https:\/\/www.fundacionisabelgemio.com\/wp-content\/uploads\/2021\/05\/eu_flag_co_funded_pos_rgb_right-600x171.jpg 600w\" sizes=\"auto, (max-width: 1964px) 100vw, 1964px\" \/><\/a><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Madrid, 28 de febrero de 2022.- La Fundaci\u00f3n Isabel Gemio presenta, con ocasi\u00f3n del d\u00eda mundial de las enfermedades raras, [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":21949,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[714],"tags":[],"class_list":["post-14483","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-eventos-en"],"_links":{"self":[{"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/posts\/14483","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/comments?post=14483"}],"version-history":[{"count":4,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/posts\/14483\/revisions"}],"predecessor-version":[{"id":14497,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/posts\/14483\/revisions\/14497"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/media\/21949"}],"wp:attachment":[{"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/media?parent=14483"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/categories?post=14483"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.fundacionisabelgemio.com\/en\/wp-json\/wp\/v2\/tags?post=14483"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}