{"id":115958,"date":"2024-03-08T15:46:11","date_gmt":"2024-03-08T14:46:11","guid":{"rendered":"https:\/\/ibecbarcelona.eu\/?p=115958"},"modified":"2024-03-11T11:15:17","modified_gmt":"2024-03-11T10:15:17","slug":"ibec-and-aefat-join-forces-against-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/ibecbarcelona.eu\/ca\/ibec-i-aefat-units-contra-ataxia-telangiectasi","title":{"rendered":"L’IBEC i l’AEFAT units contra l’at\u00e0xia telangi\u00e8ctasi"},"content":{"rendered":"\n

Avui s’ha celebrat l’esdeveniment “Avances en Ataxia Telangiectasia” organitzat per l’Institut de Bioenginyeria de Catalunya (IBEC) en col\u00b7laboraci\u00f3 amb l’AEFAT, l’associaci\u00f3 espanyola fam\u00edlia at\u00e0xia-telangi\u00e8ctasi. Una trobada entre familiars de pacients, investigadors i cl\u00ednics per aprofundir en els \u00faltims aven\u00e7os en recerca i el maneig cl\u00ednic de l’at\u00e0xia telangi\u00e8ct\u00e0sia.<\/strong><\/p>\n\n\n\n

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

Avui s’ha celebrat l’esdeveniment “Avances en Ataxia Telangiectasia” organitzat per l’Institut de Bioenginyeria de Catalunya (IBEC) en col\u00b7laboraci\u00f3 amb l’AEFAT, que agrupa les fam\u00edlies afectades per at\u00e0xia telangi\u00e8ctasi (AT) a Espanya, una malaltia rara que afecta almenys 40 nens i joves al pa\u00eds.<\/p>\n\n\n\n

La trobada, que ha tingut lloc al Parc Cient\u00edfic de Barcelona (PCB), ha reunit familiars de pacients, investigadors i cl\u00ednics amb el prop\u00f2sit d’informar sobre els projectes de recerca atorgats recentment per l’AEFAT. Un espai de reflexi\u00f3 per aprofundir en els \u00faltims aven\u00e7os en el maneig cl\u00ednics de l’at\u00e0xia telangi\u00e8ct\u00e0sia.<\/a><\/p>\n\n\n\n

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L’IBEC aposta per col\u00b7laborar amb els pacients a trav\u00e9s d’associacions de pacients per poder estudiar diferents malalties rares.<\/p>\nTeresa Sanchis<\/cite><\/blockquote>\n\n\n\n

La jornada ha iniciat amb un petit aperitiu i la benvinguda als assistents de la m\u00e0 de Teresa Sanchis, responsable d’Estrat\u00e8gia de l’IBEC, que ha donat una visi\u00f3 general de la recerca que es porta a terme al centre i les iniciatives per comunicar-la a la societat. “L’IBEC aposta per col\u00b7laborar amb els pacients a trav\u00e9s d’associacions de pacients per poder estudiar diferents malalties rares” ha destacat Sanchis.<\/p>\n\n\n\n

A continuaci\u00f3, ha estat el torn de N\u00faria Montserrat Pulido, qui ha exercit un paper clau com a nexe entre l’IBEC i l’AEFAT, liderant l’organitzaci\u00f3 de la jornada. La seva posici\u00f3 com a investigadora principal a l’IBEC i benefici\u00e0ria d’un dels projectes de recerca finan\u00e7ats per l’AEFAT ha estat la base d’aquesta col\u00b7laboraci\u00f3. El projecte de Montserrat, titulat “Modelling Ataxia Telangiectasia pathogenesis and therapeutics using human pluripotent stem cells and genetic engineering”<\/a>, t\u00e9 com a objectiu desenvolupar organoides a partir de les c\u00e8l\u00b7lules dels pacients que permetin assajar processos d’edici\u00f3 g\u00e8nica per a diferents mutacions i crear una plataforma per testar f\u00e0rmacs.<\/p>\n\n\n\n

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Quan aquest projecte finalitzi, el nostre objectiu \u00e9s que les eines desenvolupades estiguin disponibles per a d’altres, permetent que les utilitzin i millorin.<\/p>\nN\u00faria Montserrat<\/cite><\/blockquote>\n\n\n\n

En paraules de N\u00faria Montserrat: “Quan aquest projecte finalitzi, el nostre objectiu \u00e9s que les eines desenvolupades estiguin disponibles per a d’altres, permetent que les utilitzin i millorin. La nostra meta \u00e9s contribuir al progr\u00e9s constant en la investigaci\u00f3 de l’at\u00e0xia telangi\u00e8ct\u00e0sia i malalties similars, assegurant que la informaci\u00f3 obtinguda estigui disponible per a les associacions de pacients.”<\/p>\n\n\n\n

La jornada ha continuat amb la intervenci\u00f3 d’altres investigadors que han presentat el treball que duen a terme dins dels projectes de recerca de l’AEFAT. Entre ells Marc G\u00fcell, Investigador responsable del grup Translational Synthetic Biology group de la Universitat Pompeu Fabra (UPF) i Roberto Bilbao, director cient\u00edfic del Biobanco Vasco, Fundaci\u00f3 basca d’innovaci\u00f3 i recerca sanit\u00e0ries (Bioef).<\/p>\n\n\n\n

S’ha comptat a m\u00e9s amb la participaci\u00f3 de Jordi Surrall\u00e9s, director de l’Institut de Recerca de l’Hospital de la Santa Creu i Sant Pau; Alejandra Darling i neur\u00f2loga pedi\u00e0trica de l’Hospital Sant Joan de D\u00e9u; que han aportat la visi\u00f3 cl\u00ednica.<\/p>\n\n\n\n

Finalment, la jornada ha concl\u00f2s amb els emotius testimonis d’alguns dels presents, explicant la seva hist\u00f2ria personal amb l’at\u00e0xia\u00a0telangi\u00e8ctasi\u00a0i agraint la tasca de recerca portada a terme. Despr\u00e9s de la clausura, els assistents han pogut visitar les instal\u00b7lacions de l’IBEC\u00a0per con\u00e8ixer els laboratoris on es dur\u00e0 a terme el projecte de N\u00faria Montserrat.<\/p>\n\n\n\n

Aquest esdeveniment exemplifica el comprom\u00eds de l’IBEC a col\u00b7laborar estretament amb associacions de pacients, impulsant projectes de recerca centrats en les necessitats reals d’aquests. Aquest enfocament integral no nom\u00e9s refor\u00e7a la connexi\u00f3 entre la recerca cient\u00edfica i la comunitat afectada, sin\u00f3 que tamb\u00e9 crea un context valu\u00f3s per al desenvolupament de solucions innovadores i ter\u00e0pies efectives.<\/p>\n\n\n\n

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Teresa Sanchis \/ Cr\u00e8dit: Xavier D\u2019Arquer<\/figcaption><\/figure>\n\n\n\n
\"\"<\/figure>\n\n\n\n
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N\u00faria Montserrat\/ Cr\u00e8dit: Xavier D\u2019Arquer<\/figcaption><\/figure>\n\n\n\n
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Cr\u00e8dit: Xavier D\u2019Arquer<\/figcaption><\/figure>\n<\/figure>\n","protected":false},"excerpt":{"rendered":"

Avui s’ha celebrat l’esdeveniment “Avances en Ataxia Telangiectasia” organitzat per l’Institut de Bioenginyeria de Catalunya (IBEC) en col\u00b7laboraci\u00f3 amb l’AEFAT, l’associaci\u00f3 espanyola fam\u00edlia at\u00e0xia-telangi\u00e8ctasi. Una trobada entre familiars de pacients, investigadors i cl\u00ednics per aprofundir en els \u00faltims aven\u00e7os en el maneig cl\u00ednics de l’at\u00e0xia telangi\u00e8ct\u00e0sia.<\/p>\n","protected":false},"author":37,"featured_media":115935,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[98],"tags":[1731,1944,1123,1780],"post_formats":[],"class_list":["post-115958","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticies-institucionals","tag-esdeveniment","tag-malalties-rares","tag-nuria-montserrat-ca-2","tag-pluripotency-for-organ-regeneration-ca"],"yoast_head":"\nL'IBEC i l'AEFAT units contra l'at\u00e0xia telangi\u00e8ctasi - 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\/ca\/ibec-i-aefat-units-contra-ataxia-telangiectasi\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"L'IBEC i l'AEFAT units contra l'at\u00e0xia telangi\u00e8ctasi - Institute for Bioengineering of Catalonia\" \/>\n<meta property=\"og:description\" content=\"Avui s'ha celebrat l'esdeveniment "Avances en Ataxia Telangiectasia" organitzat per l'Institut de Bioenginyeria de Catalunya (IBEC) en col\u00b7laboraci\u00f3 amb l'AEFAT, l'associaci\u00f3 espanyola fam\u00edlia at\u00e0xia-telangi\u00e8ctasi. 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