{"id":29168,"date":"2023-07-04T12:48:02","date_gmt":"2023-07-04T11:48:02","guid":{"rendered":"https:\/\/algarve7.pt\/?p=29168"},"modified":"2023-07-04T12:48:04","modified_gmt":"2023-07-04T11:48:04","slug":"investigador-da-ualg-recebe-1-milhao-de-euros-para-desenvolver-projeto-para-criancas-com-doencas-raras","status":"publish","type":"post","link":"https:\/\/algarve7.pt\/index.php\/2023\/07\/investigador-da-ualg-recebe-1-milhao-de-euros-para-desenvolver-projeto-para-criancas-com-doencas-raras\/saude\/12\/48\/","title":{"rendered":"Investigador da UAlg recebe 1 milh\u00e3o de euros para desenvolver projeto para crian\u00e7as com doen\u00e7as raras"},"content":{"rendered":"\n<p>Cl\u00e9vio N\u00f3brega, investigador principal do Algarve Biomedical Center Research Institute (ABC-RI) e docente da Faculdade de Medicina e Ci\u00eancias Biom\u00e9dicas (FMCB) da Universidade do Algarve, acaba de receber um projeto de 1 milh\u00e3o de euros, da Associa\u00e7\u00e3o Viljem Julijan para Crian\u00e7as com Doen\u00e7as Raras, uma associa\u00e7\u00e3o eslovena sem fins lucrativos, para desenvolver uma terapia g\u00e9nica para uma doen\u00e7a rara.\u00a0<\/p>\n\n\n\n<p>O investigador deslocou-se esta semana \u00e0 cidade de Liubliana, na Eslov\u00e9nia, para apresentar o novo projeto tendo, nesta ocasi\u00e3o, sido recebido pelos fundadores da associa\u00e7\u00e3o, pelo diretor cient\u00edfico e membros da associa\u00e7\u00e3o, mas reunindo tamb\u00e9m com um conjunto de empresas e entidades governamentais.&nbsp;<\/p>\n\n\n\n<p>Este financiamento segue-se a um outro para o projeto \u201cCureCSB \u2013 Development of a Gene Therapy for Cockayne Syndrome Type B\u201d, financiado em mais de 1 milh\u00e3o de euros, demonstrando assim a capacidade do ABC-RI e do laborat\u00f3rio de investiga\u00e7\u00e3o liderado por Cl\u00e9vio N\u00f3brega para desenvolver terapias g\u00e9nicas para doen\u00e7as raras em contexto pr\u00e9-cl\u00ednico, a n\u00edvel internacional.<\/p>\n\n\n\n<p>De acordo com Nejc Jelen, presidente da Associa\u00e7\u00e3o Viljem Julijan para Crian\u00e7as com Doen\u00e7as Raras: \u201cas doen\u00e7as gen\u00e9ticas muito raras destroem a vidas das crian\u00e7as afetadas e das suas fam\u00edlias. Para esta doen\u00e7a em particular, n\u00e3o havendo cura ou tratamento, sendo, por isso, mortal at\u00e9 agora, n\u00e3o havia esperan\u00e7a nem para os pacientes nem para as suas fam\u00edlias. Neste momento sentimos que existe esperan\u00e7a e, na nossa associa\u00e7\u00e3o, estamos muito felizes e entusiasmados por podermos financiar a investiga\u00e7\u00e3o de Cl\u00e9vio N\u00f3brega. Acreditamos que este trabalho \u00e9 muito importante e que resultar\u00e1 numa terapia gen\u00e9tica que salvar\u00e1, no futuro, a vida de crian\u00e7as nascidas com esta doen\u00e7a e outras doen\u00e7as raras\u201d.<\/p>\n\n\n\n<p>Por ocasi\u00e3o desta visita, Cl\u00e9vio N\u00f3brega destacou ainda o car\u00e1cter ambicioso do projeto, ressaltando que \u201ceste novo financiamento possibilita a cria\u00e7\u00e3o de uma plataforma para o desenvolvimento de terapias g\u00e9nicas para doen\u00e7as raras, que ser\u00e1 \u00fanica a n\u00edvel nacional e inovadora a n\u00edvel europeu. \u00c9 um desafio \u00fanico para o nosso laborat\u00f3rio, centro de investiga\u00e7\u00e3o e universidade, mas, com o apoio e empenho abriremos caminho para verdadeira inova\u00e7\u00e3o e transla\u00e7\u00e3o de resultados da investiga\u00e7\u00e3o para a sociedade\u201d.&nbsp;<\/p>\n\n\n\n<p>Para isso, o grupo de investiga\u00e7\u00e3o conta j\u00e1 com o apoio de especialistas tanto na \u00e1rea cl\u00ednica como na \u00e1rea farmac\u00eautica, garantindo, desde logo, uma estreita intera\u00e7\u00e3o com as entidades reguladoras com vista \u00e0 aplica\u00e7\u00e3o da terapia g\u00e9nica em contexto de ensaio cl\u00ednico.&nbsp;<\/p>\n\n\n\n<p>Recorde-se que a Associa\u00e7\u00e3o Viljem Julijan para Crian\u00e7as com Doen\u00e7as Raras \u00e9 financiada, maioritariamente, atrav\u00e9s de a\u00e7\u00f5es de fundraising, apostando no investimento em investiga\u00e7\u00e3o relevante e possibilitando aos pacientes e \u00e0s suas fam\u00edlias um vislumbre sobre o futuro ao n\u00edvel do tratamento ou mitiga\u00e7\u00e3o dos efeitos provocados por estas doen\u00e7as.&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Cl\u00e9vio N\u00f3brega, investigador principal do Algarve Biomedical Center Research Institute (ABC-RI) e docente da Faculdade de Medicina e Ci\u00eancias Biom\u00e9dicas<\/p>\n","protected":false},"author":1,"featured_media":29169,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"colormag_page_container_layout":"default_layout","colormag_page_sidebar_layout":"default_layout","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[59],"tags":[36,658,58,182],"class_list":["post-29168","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saude","tag-algarve","tag-algarve-biomedical-center","tag-saude","tag-ualg"],"yoast_head":"<!-- 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