{"id":4574,"date":"2023-04-18T18:14:11","date_gmt":"2023-04-18T16:14:11","guid":{"rendered":"http:\/\/www.cutislaxa.org\/a-propos\/our-patrons\/"},"modified":"2026-03-19T17:41:48","modified_gmt":"2026-03-19T16:41:48","slug":"our-patrons","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-patrons\/","title":{"rendered":"Parrainages"},"content":{"rendered":"

Parrainages <\/h1>
<\/div><\/div><\/div><\/div>\n
<\/div><\/div><\/div><\/div>\n

Notre Parrain<\/h3>\n

LARSENE est un magicien c\u00e9l\u00e8bre pour ses prestations lors de grands \u00e9v\u00e8nements sportifs sur le territoire fran\u00e7ais (Tournoi de Tennis de Roland-Garros, Tour de France cycliste).
\nCe n\u2019est parce que l\u2019on est malade que l\u2019on est triste, loin de l\u00e0, …… et LARSENE nous aide \u00e0 garder ce cap….. Nous l\u2019en remercions vivement.<\/p>\n

Et….. Quelle surprise…..Alors que j’\u00e9tais invit\u00e9e pour une interview sur la radio \u00ab\u00a0Vivre FM\u00a0\u00bb, nous avons d\u00e9couvert que nous \u00e9tions tous les deux interview\u00e9s le m\u00eame jour………<\/p>\n

Nous organiserons bient\u00f4t un \u00e9v\u00e8nement ensemble……. Merci Larsene de rester fid\u00e8lement \u00e0 nos c\u00f4t\u00e9s.<\/p>\n

\"\"<\/p>\n

Allez jeter un coup d’oeil<\/p>\n

\"\"<\/p>\n

www.magicien-larsene.fr<\/a><\/p>\n<\/div><\/section><\/div>\n

<\/span><\/span><\/div>\n
<\/div><\/div><\/div><\/div>\n

Notre marraine<\/span><\/h3>\n

Nathalie Rihouet, journaliste sur France 2<\/h2>\n

\u00ab\u00a0Il y a encore peu de temps, la Cutis Laxa \u00e9tait ce que l\u2019on appelle une \u00ab\u00a0Maladie Orpheline\u00a0\u00bb. Les cas d\u00e9clar\u00e9s \u00e9taient si rares qu\u2019aucune recherche ne pouvait d\u00e9buter. Il ne restait plus aux malades et \u00e0 leurs familles qu\u2019\u00e0 essayer de vivre avec cette maladie, dans l\u2019isolement.<\/em><\/p>\n

Une maladie que l\u2019on savait tout de m\u00eame g\u00e9n\u00e9tique et que l\u2019on pouvait tout juste d\u00e9finir\u00a0: Perte d\u2019\u00e9lasticit\u00e9 des tissus conjonctifs. Cela se traduit par un rel\u00e2chement de la peau … \u00e0 l\u2019ext\u00e9rieur … parce que ce sont tous les organes qui sont concern\u00e9s.<\/em><\/p>\n

C\u00e9cile est atteinte de Cutis Laxa. Pendant 10 ans, ses parents, sa famille, tentent de lutter contre cette fatalit\u00e9. Sans aide, sans soutien de l\u2019Etat ou d\u2019une quelconque structure scientifique. Jusqu\u2019au jour o\u00f9 le visage de C\u00e9cile est apparu sur nos \u00e9crans, \u00e0 l\u2019occasion du TELETHON . Sa maladie fut ainsi m\u00e9diatis\u00e9e, connue par le plus grand nombre. Si bien que d\u2019autres personnes atteintes de Cutis Laxa se sont reconnues\u00a0: 9, puis 10, puis 11, ….<\/em><\/p>\n

Aujourd\u2019hui, cette maladie n\u2019est plus orpheline. C\u00e9cile et les autres ont pu sortir de l\u2019isolement dans lequel ils \u00e9taient enferm\u00e9s depuis si longtemps.<\/em><\/p>\n

\u00e7a c\u2019est la 1\u00e8re Victoire !<\/strong><\/em><\/p>\n

Une Association est donc n\u00e9e. Elle rassemble aujourd\u2019hui 582 malades et leurs familles, en France,en Australie, en Cor\u00e9e, au Japon, au Liban, en Iran, au Mexique, aux Etats-Unis, au Br\u00e9sil, en Argentine, en Hollande, en Belgique, en Irlande du Nord, en Allemagne, en Grande-Bretagne, en Espagne, en Suisse,……… Mais, pour ces malades atteints de Cutis Laxa, combien d\u2019autres ignorent l\u2019origine de leur mal, ne sont pas inform\u00e9s et se terrent \u00e0 l\u2019abri des regards.<\/em><\/p>\n

La recherche est maintenant en chemin, mais comme pour tous les combats, le nerf de la guerre c\u2019est l\u2019argent\u00a0!<\/em><\/p>\n

Cette maladie peut s\u2019abattre sur n\u2019importe lequel de nos enfants \u00e0 na\u00eetre.<\/em><\/p>\n

Personne n\u2019est \u00e0 l\u2019abri.<\/em><\/p>\n

Merci de nous aider \u00e0 vaincre la Cutis Laxa\u00a0.\u00a0\u00bb<\/em><\/p>\n

\"\"<\/p>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":3412,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-4574","page","type-page","status-publish","hentry"],"yoast_head":"\nParrainages - CUTIS LAXA INTERNATIONALE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-patrons\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Parrainages - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-patrons\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-19T16:41:48+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/06\/LARSENE-300x225.jpg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-patrons\/\",\"url\":\"https:\/\/www.cutislaxa.org\/fr\/a-propos\/our-patrons\/\",\"name\":\"Parrainages - 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