{"id":4446,"date":"2019-06-03T08:13:15","date_gmt":"2019-06-03T08:13:15","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/03\/participamos-en-la-asamblea-y-congreso-de-telangiectasia-hemorragica-hereditaria-hht\/"},"modified":"2019-06-03T08:13:15","modified_gmt":"2019-06-03T08:13:15","slug":"participamos-en-la-asamblea-y-congreso-de-telangiectasia-hemorragica-hereditaria-hht","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/03\/participamos-en-la-asamblea-y-congreso-de-telangiectasia-hemorragica-hereditaria-hht\/","title":{"rendered":"Participamos en la Asamblea y Congreso de Telangiectasia Hemorr\u00e1gica Hereditaria (HHT)"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El pasado 1 de junio se celebr\u00f3 en Murcia, la Asamblea y Congreso de Telangiectasia Hemorr\u00e1gica Hereditaria (HHT) Espa\u00f1a, en la que tuvimos el placer de participar, gracias a la representaci\u00f3n que realizaron Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n, Santiago de la Riva y David S\u00e1nchez, miembros de nuestra Junta Directiva.<\/p>\n<p>En este encuentro, donde participaron un total de 150 asistentes y en el que la armon\u00eda y el cari\u00f1o fueron los protagonistas, se realiz\u00f3 una lectura de la memoria de actividades y gesti\u00f3n de la Junta Directiva del pasado a\u00f1o. Adem\u00e1s, se procedi\u00f3 a la lectura de la memoria econ\u00f3mica del 2018 y se present\u00f3 las candidaturas de los nuevos miembros de la Junta Directiva de la Asociaci\u00f3n HHT Espa\u00f1a.<\/p>\n<p>Por otro lado, en esta reuni\u00f3n, los asistentes tuvieron la oportunidad de conocer los dos nuevos medicamentos hu\u00e9rfanos vigentes para esta enfermedad poco frecuente. Adem\u00e1s, gracias al esfuerzo incansable que realiza la entidad se est\u00e1 trabajando actualmente en el desarrollo de un tercer medicamento hu\u00e9rfano que arrojar\u00e1 esperanza para todos aquellos pacientes que conviven con Telangiectasia Hemorr\u00e1gica Hereditaria y para sus familiares.<\/p>\n<p>Durante el Congreso tambi\u00e9n se pudo conocer los avances cient\u00edficos sobre la enfermedad, gracias al trabajo que se est\u00e1 realizando D\u00aa Luisa Mar\u00eda Botella Cubells del Centro de Investigaciones Biol\u00f3gicas (CIB) y del Consejo Superior de Investigaciones Cl\u00ednicas (CSIC), a trav\u00e9s de su proyecto \u2018Una nueva terapia angiangiog\u00e9nica para disminuci\u00f3n de los sangrados de HHT, a trav\u00e9s de la inhibici\u00f3n de la se\u00f1alizaci\u00f3n de FGF (Fibroblast Growth Factor)\u201d, el cual fue beneficiario de nuestra I Convocatoria de ayudas a la investigaci\u00f3n.<\/p>\n<p>Para finalizar el congreso, desde la organizaci\u00f3n se abri\u00f3 un espacio donde los participantes pudieron plantear sus ruegos y preguntas, donde trasladaron todas sus dudas acerca de los temas tratados en el encuentro.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 03\/06\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12436-participamos-en-la-asamblea-y-congreso-de-telangiectasia-hemorr%C3%A1gica-hereditaria-hht-que-se-celebr%C3%B3-en-murcia\" target=\"_blank\" rel=\"noopener noreferrer\">Participamos en la Asamblea y Congreso de Telangiectasia Hemorr\u00e1gica Hereditaria (HHT)<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El pasado 1 de junio se celebr\u00f3 en Murcia, la Asamblea y Congreso de Telangiectasia Hemorr\u00e1gica Hereditaria (HHT) Espa\u00f1a, en la que tuvimos el placer de participar, gracias a la representaci\u00f3n que realizaron Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n, Santiago [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4446","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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