{"id":115959,"date":"2024-03-08T15:46:11","date_gmt":"2024-03-08T14:46:11","guid":{"rendered":"https:\/\/ibecbarcelona.eu\/?p=115959"},"modified":"2024-03-11T11:25:03","modified_gmt":"2024-03-11T10:25:03","slug":"ibec-and-aefat-join-forces-against-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/ibecbarcelona.eu\/es\/el-ibec-y-la-aefat-unidos-contra-la-ataxia-telangiectasia","title":{"rendered":"El IBEC y la AEFAT unidos contra la ataxia telangiectasia"},"content":{"rendered":"\n

Hoy se ha celebrado el evento \u201cAvances en Ataxia Telangiectasia\u201d organizado por el Instituto de Bioingenier\u00eda de Catalu\u00f1a (IBEC) en colaboraci\u00f3n con la AEFAT, la asociaci\u00f3n espa\u00f1ola familia ataxia-telangiectasia. Un encuentro entre familiares de pacientes, investigadores y cl\u00ednicos para profundizar en los \u00faltimos avances en la investigaci\u00f3n y el manejo cl\u00ednicos de la ataxia telangiectasia.<\/strong><\/p>\n\n\n\n

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<\/div>\n\n\n\n

Hoy se ha celebrado el evento \u201cAvances en Ataxia Telangiectasia\u201d organizado por el Instituto de Bioingenier\u00eda de Catalu\u00f1a (IBEC) en colaboraci\u00f3n con la AEFAT, que agrupa a las familias afectadas por ataxia telangiectasia (AT) en Espa\u00f1a, una enfermedad rara que afecta a al menos a 40 ni\u00f1os y j\u00f3venes en el pa\u00eds.<\/p>\n\n\n\n

El encuentro, que ha tenido lugar en el Parque Cient\u00edfico de Barcelona (PCB), ha reunido a familiares de pacientes, investigadores y cl\u00ednicos con el prop\u00f3sito de informar sobre los proyectos de investigaci\u00f3n otorgados recientemente por la AEFAT. Un espacio de reflexi\u00f3n para profundizar en los \u00faltimos avances en el manejo cl\u00ednicos de la ataxia telangiectasia.<\/p>\n\n\n\n

\n

El IBEC apuesta por colaborar con los pacientes a trav\u00e9s de asociaciones de pacientes para poder estudiar diferentes enfermedades raras<\/p>\nTeresa Sanchis<\/cite><\/blockquote>\n\n\n\n

La jornada ha iniciado con un peque\u00f1o aperitivo y la bienvenida a los asistentes de la mano de Teresa Sanchis, responsable de Estrategia del IBEC, que ha dado una visi\u00f3n general de la investigaci\u00f3n que se lleva acabo en el centro y las iniciativas para comunicarla a la sociedad. \u201cEl IBEC apuesta por colaborar con los pacientes a trav\u00e9s de asociaciones de pacientes para poder estudiar diferentes enfermedades raras\u201d ha destacado Sanchis.<\/p>\n\n\n\n

A continuaci\u00f3n, ha sido el turno de N\u00faria Montserrat Pulido, quien ha desempe\u00f1ado un papel clave como nexo entre el IBEC y la AEFAT, liderando la organizaci\u00f3n de la jornada. Su posici\u00f3n como investigadora principal en el IBEC y beneficiaria de uno de los proyectos de investigaci\u00f3n financiados por la AEFAT ha sido la base de esta colaboraci\u00f3n. El proyecto de Montserrat, titulado \u201cModelling Ataxia Telangiectasia pathogenesis and therapeutics using human pluripotent stem cells and genetic engineering\u201d<\/a>, tiene como objetivo desarrollar organoides a partir de las c\u00e9lulas de los pacientes que permitan ensayar procesos de edici\u00f3n g\u00e9nica para distintas mutaciones y crear una plataforma para testar f\u00e1rmacos.<\/p>\n\n\n\n

\n

Cuando este proyecto finalice, nuestro objetivo es que las herramientas desarrolladas est\u00e9n disponibles para otros, permitiendo que las utilicen y mejoren.<\/p>\nN\u00faria Montserrat<\/cite><\/blockquote>\n\n\n\n

En palabras de N\u00faria Montserrat: \u00abCuando este proyecto finalice, nuestro objetivo es que las herramientas desarrolladas est\u00e9n disponibles para otros, permitiendo que las utilicen y mejoren. Nuestra meta es contribuir al progreso constante en la investigaci\u00f3n de la ataxia telangiectasia y enfermedades similares, asegurando que la informaci\u00f3n obtenida est\u00e9 disponible para las asociaciones de pacientes.\u00bb<\/p>\n\n\n\n

La jornada ha continuado con la intervenci\u00f3n de otros investigadores que han presentado el trabajo que llevan a cabo dentro de los proyectos de investigaci\u00f3n de la AEFAT. Entre ellos Marc G\u00fcell, Investigador responsable del grupo Translational Synthetic Biology group de la Universidad Pompeu Fabra (UPF) y Roberto Bilbao, director cient\u00edfico del Biobanco Vasco, Fundaci\u00f3n vasca de innovaci\u00f3n e investigaci\u00f3n sanitarias (Bioef).<\/p>\n\n\n\n

Se ha contado adem\u00e1s con la participaci\u00f3n de Jordi Surrall\u00e9s, director del Instituto de Investigaci\u00f3n del Hospital de la Santa Creu i Sant Pau y Alejandra Darling, neur\u00f3loga pedi\u00e1trica del Hospital Sant Joan de Deu; que han aportado la visi\u00f3n cl\u00ednica.<\/p>\n\n\n\n

Finalmente, la jornada ha concluido con los emotivos testimonios de algunos de los presentes, contando su historia personal con la ataxia telangiectasia y agradeciendo el trabajo de investigaci\u00f3n llevado a cabo. Tras la clausura, los asistentes han podido visitar las instalaciones del IBEC a fin de conocer los laboratorios d\u00f3nde se llevar\u00e1 a cabo el proyecto de N\u00faria Montserrat.<\/p>\n\n\n\n

Este evento ejemplifica el compromiso del IBEC en colaborar estrechamente con asociaciones de pacientes, impulsando proyectos de investigaci\u00f3n centrados en las necesidades reales de estos. Este enfoque integral no solo refuerza la conexi\u00f3n entre la investigaci\u00f3n cient\u00edfica y la comunidad afectada, sino que tambi\u00e9n crea un contexto valioso para el desarrollo de soluciones innovadoras y terapias efectivas.<\/p>\n\n\n\n

\n
\"\"
Teresa Sanchis \/ Cr\u00e9dito: Xavier D\u2019Arquer<\/figcaption><\/figure>\n\n\n\n
\"\"<\/figure>\n\n\n\n
\"\"
N\u00faria Montserrat\/ Cr\u00e9dito: Xavier D\u2019Arquer<\/figcaption><\/figure>\n\n\n\n
\"\"
Cr\u00e9dito: Xavier D\u2019Arquer<\/figcaption><\/figure>\n<\/figure>\n","protected":false},"excerpt":{"rendered":"

Hoy se ha celebrado el evento \u201cAvances en Ataxia Telangiectasia\u201d organizado por el Instituto de Bioingenier\u00eda de Catalu\u00f1a (IBEC) en colaboraci\u00f3n con la AEFAT, la asociaci\u00f3n espa\u00f1ola familia ataxia-telangiectasia. Un encuentro entre familiares de pacientes, investigadores y cl\u00ednicos para profundizar en los \u00faltimos avances en el manejo cl\u00ednicos de la ataxia telangiectasia.<\/p>\n","protected":false},"author":37,"featured_media":115936,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[94],"tags":[1945,1733,1124,1781],"post_formats":[],"class_list":["post-115959","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias-institucionales","tag-enfermedades-raras","tag-evento","tag-nuria-montserrat-es-2","tag-pluripotency-for-organ-regeneration-es"],"yoast_head":"\nEl IBEC y la AEFAT unidos contra la ataxia telangiectasia - Institute for Bioengineering of Catalonia<\/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:\/\/ibecbarcelona.eu\/es\/el-ibec-y-la-aefat-unidos-contra-la-ataxia-telangiectasia\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El IBEC y la AEFAT unidos contra la ataxia telangiectasia - Institute for Bioengineering of Catalonia\" \/>\n<meta property=\"og:description\" content=\"Hoy se ha celebrado el evento \u201cAvances en Ataxia Telangiectasia\u201d organizado por el Instituto de Bioingenier\u00eda de Catalu\u00f1a (IBEC) en colaboraci\u00f3n con la AEFAT, la asociaci\u00f3n espa\u00f1ola familia ataxia-telangiectasia. 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