{"id":550,"date":"2025-10-14T16:39:05","date_gmt":"2025-10-14T16:39:05","guid":{"rendered":"https:\/\/infermeresbcn.org\/?p=550"},"modified":"2025-10-14T16:39:05","modified_gmt":"2025-10-14T16:39:05","slug":"projecte-alpha-recerca-en-distrofia-muscular-de-cintures","status":"publish","type":"post","link":"https:\/\/infermeresbcn.org\/es\/projecte-alpha-recerca-en-distrofia-muscular-de-cintures\/","title":{"rendered":"Projecte Alpha: recerca en distr\u00f2fia muscular de cintures"},"content":{"rendered":"

El <\/span>Projecte Alpha<\/span><\/b> dona suport a la recerca desenvolupada per l\u2019Hospital Sant Joan de D\u00e9u amb l\u2019objectiu de con\u00e8ixer millor la <\/span>Distr\u00f2fia Muscular de Cintures per d\u00e8ficit de Sarcoglicans<\/span><\/b> i avan\u00e7ar cap a tractaments curatius que avui encara no existeixen.<\/span>\u00a0<\/span><\/p>\n

Es tracta d\u2019una malaltia rara i minorit\u00e0ria: afecta unes 30 persones a Espanya i m\u00e9s de 400 a Europa. Malgrat aix\u00f2, forma part del conjunt de prop de 7.000 malalties rares que impacten en el 7% de la poblaci\u00f3 mundial.<\/span>\u00a0<\/span><\/p>\n

Els pacients amb malalties rares afronten grans dificultats: una mitjana de 5 anys fins al diagn\u00f2stic i, en el 20% dels casos, fins a 10 anys o m\u00e9s. Durant aquest temps, molts no reben el suport necessari o fins i tot tractaments inadequats.<\/span>\u00a0<\/span><\/p>\n

    \n
  1. Objectius<\/span><\/b><\/li>\n<\/ol>\n
      \n
    • Fomentar la recerca biom\u00e8dica per a la distr\u00f2fia muscular de cintures.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
        \n
      • Millorar el coneixement i la detecci\u00f3 preco\u00e7 de la malaltia.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
          \n
        • Aconseguir futurs tractaments curatius.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
            \n
          • Donar suport integral als pacients i fam\u00edlies.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
              \n
            1. Accions principals<\/span><\/b><\/li>\n<\/ol>\n
                \n
              • Finan\u00e7ament de projectes d\u2019investigaci\u00f3 a l\u2019Hospital Sant Joan de D\u00e9u.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                  \n
                • Programes de suport emocional i rehabilitaci\u00f3 per a pacients.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                    \n
                  • Difusi\u00f3 i sensibilitzaci\u00f3 sobre la malaltia i la realitat de les malalties rares.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                      \n
                    1. Impacte esperat<\/span><\/b><\/li>\n<\/ol>\n
                        \n
                      • Avan\u00e7 cient\u00edfic en el coneixement d\u2019una malaltia minorit\u00e0ria.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                          \n
                        • Millor qualitat de vida per a les persones afectades i les seves fam\u00edlies.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                            \n
                          • Reducci\u00f3 del temps d\u2019espera fins al diagn\u00f2stic correcte.<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                              \n
                            1. Col\u00b7laboracions<\/span><\/b><\/li>\n<\/ol>\n
                                \n
                              • Projecte Alpha (associaci\u00f3 de pacients)<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                                  \n
                                • Hospital Sant Joan de D\u00e9u<\/span>\u00a0<\/span><\/li>\n<\/ul>\n
                                    \n
                                  • Fundaci\u00f3 Infermeres Barcelona<\/span>\u00a0<\/span><\/li>\n<\/ul>","protected":false},"excerpt":{"rendered":"

                                    Projecte de recerca per avan\u00e7ar en el coneixement i la detecci\u00f3 preco\u00e7 de la distr\u00f2fia muscular de cintures per d\u00e8ficit de sarcoglicans, una malaltia rara sense tractament curatiu. <\/p>","protected":false},"author":1,"featured_media":551,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[9],"tags":[],"class_list":["post-550","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-projecte"],"acf":[],"_links":{"self":[{"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/posts\/550","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/comments?post=550"}],"version-history":[{"count":1,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/posts\/550\/revisions"}],"predecessor-version":[{"id":557,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/posts\/550\/revisions\/557"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/media\/551"}],"wp:attachment":[{"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/media?parent=550"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/categories?post=550"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/infermeresbcn.org\/es\/wp-json\/wp\/v2\/tags?post=550"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}