{"id":96144,"date":"2026-05-06T12:34:47","date_gmt":"2026-05-06T10:34:47","guid":{"rendered":"https:\/\/canfali.com\/verdu-artesanos-crea-el-pastis-mes-bo-del-mon-per-recoltzar-a-luca-i-la-investigacio-contra-la-sindrome-difap\/"},"modified":"2026-05-06T12:41:28","modified_gmt":"2026-05-06T10:41:28","slug":"verdu-artesanos-crea-el-pastis-mes-bo-del-mon-per-recoltzar-a-luca-i-la-investigacio-contra-la-sindrome-difap","status":"publish","type":"post","link":"https:\/\/canfali.com\/ca-es\/verdu-artesanos-crea-el-pastis-mes-bo-del-mon-per-recoltzar-a-luca-i-la-investigacio-contra-la-sindrome-difap\/","title":{"rendered":"Verd\u00fa Artesanos crea “el past\u00eds m\u00e9s bo del m\u00f3n” per recoltzar a Luca i la investigaci\u00f3 contra la s\u00edndrome d’IFAP"},"content":{"rendered":"\n

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Est\u00e0 inspirada en els sabors favorits de Lucca, el xiquet de D\u00e9nia afectat per esta malaltia, i destinar\u00e0 el 100% dels beneficis a la seua causa \n \n<\/p>\n<\/blockquote>\n\n

Verd\u00fa Artesans, tradicional pastisseria i gelateria de D\u00e9nia, ha elaborat un past\u00eds solidari l’objectiu del qual \u00e9s recaptar fons per a donar suport a la lluita contra la s\u00edndrome IFAP, una malaltia ultrarrara que afecta a Lucca, el xiquet de 3 anys amb qu\u00e8 la ciutat de D\u00e9nia s’est\u00e0 bolcant amb m\u00faltiples iniciatives. A trav\u00e9s del compte d’Instagram @soylucasindromeifap, la fam\u00edlia de Lucca ha donat molta visibilitat a la malaltia, amb la intenci\u00f3 d’arribar cada vegada m\u00e9s lluny i trobar casos similars. \n \n<\/p>\n\n

Es tracta d’un past\u00eds molt especial, ja que ha sigut elaborada pel mestre artes\u00e0 \u00c1lvaro Verd\u00fa a partir dels sabors preferits que li va demanar Luca: \u201cCrispetes, caramel i un globus\u201d. D’esta manera les postres es convertix en un homenatge al xicotet i en una forma directa de contribuir a millorar la seua qualitat de vida i avan\u00e7ar en la investigaci\u00f3 de la s\u00edndrome IFAP. \n \n<\/p>\n\n

El 100% dels beneficis obtinguts per la venda d’este past\u00eds es destinaran \u00edntegrament a la investigaci\u00f3 i tractament de la malaltia de Luca, en una acci\u00f3 que busca implicar a tota la pen\u00ednsula, gr\u00e0cies a la botiga en l\u00ednia que disposa la pastisseria. A m\u00e9s, el fet que diferents restaurants de D\u00e9nia i influencers s’estiguen unint a l’acci\u00f3 ajudar\u00e0 al fet que este objectiu es complisca. \n \n<\/p>\n\n

\u201cDe la nostra col\u00b7lecci\u00f3 de pastissos, sens dubte esta \u00e9s la m\u00e9s bona, i no sols pel que porta. Ha sigut un orgull poder treballar amb ell i amb la seua fam\u00edlia, inspirar-nos en els seus gustos i crear una cosa molt especial que esperem que ajude a finan\u00e7ar la investigaci\u00f3 i a continuar veient avan\u00e7os a Luca\u201d, assenyala Adri\u00e1n Verd\u00fa, CEO de l’empresa. \n \n<\/p>\n\n

La s\u00edndrome IFAP (Ictiosis Fol\u00b7licular, Alop\u00e8cia i Fotof\u00f2bia) \u00e9s una malaltia que afecta una persona entre un mili\u00f3 i que continua necessitant m\u00e9s investigaci\u00f3 i visibilitat. Iniciatives com esta contribu\u00efxen no sols a recaptar fons, sin\u00f3 tamb\u00e9 a donar visibilitat a esta mena de patologies. \n \n<\/p>\n\n

Els costos del tractament de Lucca i les aportacions de la fam\u00edlia a entitats investigadores ronden els 70.000 euros anuals, per la qual cosa iniciatives com esta s\u00f3n molt importants perqu\u00e8 Luca continue fent progressos en la seua recuperaci\u00f3. \n \n<\/p>\n\n

El past\u00eds solidari ja est\u00e0 disponible en l’establiment de Verd\u00fa Artesans a D\u00e9nia o a la seua botiga en l\u00ednia latartamasbuenadelmundo.com i estar\u00e0 a la venda des del 6 de maig fins al 19 de juny de 2026. \n \n<\/p>\n\n

Luca t\u00e9 3 anys i \u00e9s de D\u00e9nia (Alacant). Als 15 mesos va ser diagnosticat amb s\u00edndrome IFAP, una malaltia ultrarrara que, si \u00e9s el cas, l’afecta principalment la vista i a la pell. Estes condicions li dificulten portar una vida normal per a la seua edat. \n \n<\/p>\n\n

Gr\u00e0cies a la lluita constant de la seua fam\u00edlia, el cas de Luca ha aconseguit una major visibilitat, la qual cosa ha contribu\u00eft a un diagn\u00f2stic m\u00e9s primerenc de l’habitual en esta mena de patologies. \n \n \n<\/p>\n\n

La seua fam\u00edlia est\u00e0 bolcada en el tractament de Luca, viatjant constantment a diferents institucions m\u00e8diques (Sant Joan de D\u00e9u, Universitat de M\u00farcia, Hospital La Fe entre altres) per a continuar avan\u00e7ant en el tractament de Lucca. Per a obtindre la m\u00e0xima transpar\u00e8ncia amb les donacions obtingudes, estes s\u00f3n gestionades per l’Associaci\u00f3 sense \u00e0nim de lucre Solidaris.es. \n<\/p>\n\n

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