{"id":6990,"date":"2024-02-23T17:29:32","date_gmt":"2024-02-23T16:29:32","guid":{"rendered":"https:\/\/radiolitoral.com\/?p=6990"},"modified":"2024-02-23T17:29:32","modified_gmt":"2024-02-23T16:29:32","slug":"neix-singulars-lassociacio-comarcal-decidida-a-donar-visibilitat-i-suport-a-les-malalties-rares","status":"publish","type":"post","link":"https:\/\/radiolitoral.com\/ca\/2024\/02\/nace-singulars-la-asociacion-comarcal-decidida-a-dar-visibilidad-y-apoyo-a-las-enfermedades-raras\/","title":{"rendered":"Neix Singulars, l'associaci\u00f3 comarcal decidida a donar visibilitat i suport a les malalties rares"},"content":{"rendered":"

Avui 23 de febrer, es commemora el Dia Internacional per a la sensibilitzaci\u00f3 sobre la S\u00edndrome de Noonan, una malaltia rara, poc freq\u00fcent o de baixa prevalen\u00e7a. Una malaltia d'origen gen\u00e8tic les manifestacions fonamentals del qual s\u00f3n la talla baixa, la cardiopatia cong\u00e8nita i un fenotip facial caracter\u00edstic.<\/p>\n

Avui recordem aquesta malaltia, llan\u00e7ant un missatge d'\u00e0nim i suport als que la pateixen, per\u00f2 a m\u00e9s aprofitem aquesta efem\u00e8ride per parlar-los, de Singulars<\/strong>, una associaci\u00f3 comarcal<\/strong>, de recent constituci\u00f3, que congrega persones que pateixen malalties minorit\u00e0ries i cr\u00f2niques de la Marina Alta<\/strong>, com la S\u00edndrome de Noonan.<\/p>\n

Un col\u00b7lectiu disposat a trencar tab\u00fas<\/strong>, lluitar per donar a con\u00e8ixer la situaci\u00f3 a qu\u00e8 s'enfronten les persones malaltes i les seves fam\u00edlies, promoure la investigaci\u00f3<\/strong> que ajudi a millorar la seva qualitat de vida<\/strong> i crear consci\u00e8ncia social<\/strong> davant de la seva situaci\u00f3.<\/p>\n

Aix\u00ed ens ho ha explicat M\u00f2nica Rovira<\/strong> integrant i promotora de la creaci\u00f3 d'aquesta associaci\u00f3, que segons indica, era i \u00e9s una associaci\u00f3 m\u00e9s que necess\u00e0ria a la Marina Alta. Per la seva banda, J\u00e8ssica Sala<\/strong>, membre tamb\u00e9 d'aquest col\u00b7lectiu, apunta que ara s'han de donar a con\u00e8ixer per donar suport a tots els que ho necessitin i ajudar-los a conviure amb la malaltia.<\/p>\n

 <\/p>\n

Amb aquest objectiu des de la recent constitu\u00efda Associaci\u00f3 Singulars<\/strong>, han organitzat unes jornades de conviv\u00e8ncia<\/strong>, amb activitats l\u00fadiques, esportives i informatives<\/strong>. Un esdeveniment per presentar-se i oferir possibles interessats un lloc d'ajuda i suport. La cita ser\u00e0 a R\u00e0fol d'Almunia,<\/strong> el 2 i el 3 de mar\u00e7<\/strong>. Comptaran amb el suport de responsables pol\u00edtics i la participaci\u00f3 musical de Ximo Guardiola. Entre les activitats programades s'hi inclouen classes magistrals de pilates, ball o aikido, tamb\u00e9 es disputaran partits de futbol sala, es duran a terme tallers i xerrades.<\/p>\nhttps:\/\/media.radiolitoral.com\/wp-content\/uploads\/2024\/02\/23172625\/Monica-y-Jessica-Singulars-2.mp3<\/a><\/audio>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

Hoy 23 de febrero, se conmemora el D\u00eda Internacional para la sensibilizaci\u00f3n sobre el S\u00edndrome de Noonan, una enfermedad rara, poco frecuente o de baja prevalencia. Una dolencia de origen gen\u00e9tico cuyas manifestaciones fundamentales son la talla baja, la cardiopat\u00eda cong\u00e9nita y un fenotipo facial caracter\u00edstico. Hoy recordamos esta enfermedad, lanzando un mensaje de \u00e1nimo […]<\/p>\n

Continua llegint… from Nace Singulars, la asociaci\u00f3n comarcal decidida a dar visibilidad y apoyo a las enfermedades raras<\/span><\/a><\/p>\n","protected":false},"author":13,"featured_media":6993,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[46],"tags":[],"class_list":["post-6990","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sociedad","cobertura-marina-alta"],"acf":[],"yoast_head":"\nNace Singulars, la asociaci\u00f3n comarcal decidida a dar visibilidad y apoyo a las enfermedades raras | R\u00e0dio Litoral<\/title>\n<meta name=\"description\" content=\"Singulars ha organizado para el 2 y 3 de marzo unas jornadas de convivencia en R\u00e0fol d'Almunia para darse a conocer\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" 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