{"id":5744,"date":"2018-03-09T13:11:25","date_gmt":"2018-03-09T13:11:25","guid":{"rendered":"http:\/\/www.cutislaxa.org\/news-e\/"},"modified":"2021-06-18T15:49:43","modified_gmt":"2021-06-18T13:49:43","slug":"quoi-de-neuf","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/quoi-de-neuf\/","title":{"rendered":"QUOI DE NEUF"},"content":{"rendered":"
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CUTIS LAXA : QUOI DE NEUF ?<\/b><\/h1>
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Tout<\/span> 33 <\/small><\/span><\/a>\/<\/span>\u00c9v\u00e9nements<\/span> 0 <\/small><\/span><\/a>\/<\/span>L\u00e9gislation - soci\u00e9t\u00e9<\/span> 6 <\/small><\/span><\/a>\/<\/span>M\u00e9dias<\/span> 9 <\/small><\/span><\/a>\/<\/span>Mutations<\/span> 0 <\/small><\/span><\/a>\/<\/span>Non classifi\u00e9(e)<\/span> 0 <\/small><\/span><\/a>\/<\/span>Nouveaux contacts, Nouvelles des familles<\/span> 5 <\/small><\/span><\/a>\/<\/span>Photos<\/span> 13 <\/small><\/span><\/a>\/<\/span>Quoi de neuf<\/span> 33 <\/small><\/span><\/a>\/<\/span>Recherche<\/span> 0 <\/small><\/span><\/a>\/<\/span>Recherche - M\u00e9decine - G\u00e9n\u00e9tique<\/span> 15 <\/small><\/span><\/a>\/<\/span>Rencontres, \u00e9v\u00e9nements et manifestations<\/span> 13 <\/small><\/span><\/a>\/<\/span>Vid\u00e9o<\/span> 3 <\/small><\/span><\/a><\/div><\/div>
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Ils ont quitt\u00e9 ce monde<\/h3>
H\u00e9las, notre Grande Famille Cutis Laxa est de nouveau en deuil.
\r\nTammy\u2026<\/div>octobre 6, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Bienvenue<\/h3>
Marie, Rachel, Gavin Du, Meryem et Hassan Ali, Atyaf, Adam, Sahylin,\u2026<\/div>octobre 6, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Retour en 2001<\/h3>
C\u00e9cile est apparue pour la premi\u00e8re fois dans les m\u00e9dias le\u2026<\/div>octobre 6, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Le \u00ab\u00a0Caf\u00e9-D\u00e9bat\u00a0\u00bb des PEAUXRares<\/h3>
22 Septembre 2026:\u00a0
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\r\nMarie-Claude Boiteux a anim\u00e9\u2026<\/div>septembre 30, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Cutis Laxa au Japon<\/h3>
12 Septembre 2026:\u00a0
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\r\nLes 7e Journ\u00e9es de la Cutis Laxa\u2026<\/div>ao\u00fbt 25, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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3e Congr\u00e8s Mondial des Maladies Rares de la Peau (WCRSD)<\/h3>
1st-3rd July 2026:
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\r\nLe 3e Congr\u00e8s Mondial des Maladies Rares\u2026<\/div>juillet 15, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Dans la Presse<\/h3>
Juin 2026\u00a0:
\r\nRevue Jeunes dermatos\u00a0:
\r\n\u00ab\u00a0De la solitude \u00e0\u2026<\/div>juin 30, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Sp\u00e9l\u00e9ologie pour Cutis Laxa<\/h3>
20 et 21 Juin 2026:
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\r\nLes parents de Roxanne sont passionn\u00e9s\u2026<\/div>juin 25, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Les Chiffres de la Sant\u00e9 Mentale dans les Maladies Rares de la Peau<\/h3>
En Juin 2026, RareBarometer, l\u2019organisme de sondage d\u2019Eurordis,\u2026<\/div>juin 20, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Triathlon de Sireuil<\/h3>
13 Juin\u00a0:
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\r\nPour sa 20e \u00e9dition, le Triathlon Sireuil a couru\u2026<\/div>juin 15, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Forum International de Dermatologie<\/h3>
12 Juin\u00a0: \u00a0
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\r\nForum International de la Dermatologie organis\u00e9\u2026<\/div>juin 15, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Orphanet en Chiffres<\/h3>
\u00a0Orphanet\u00a0C\u2019est un r\u00e9seau qui s\u2019\u00e9tend sur 40 pays en\u2026<\/div>juin 5, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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79e Assembl\u00e9e Mondiale de la Sant\u00e9 (WHA)<\/h3>
20 Mai\u00a0:
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\r\nla session parall\u00e8le \u00ab De la R\u00e9solution\u2026<\/div>mai 25, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Du ski pour les enfants<\/h3>
20, 21, et 22\u00a0 Mars
\r\nLes journ\u00e9es de Glisse en c\u0153ur ont \u00e9t\u00e9\u2026<\/div>mars 25, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Les probl\u00e8mes cardiovasculaires dans la Cutis Laxa<\/h3>
Dr Ilse MEERSCHAUT
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\r\nSelon une \u00e9tude portant sur 469 malades\u2026<\/div>mars 18, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Cutis Laxa Acquise<\/h3>
Pr. Bert CALLEWAERT
\r\nVoir la pr\u00e9sentation
\r\nCe type de Cutis\u2026<\/div>mars 18, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Nouvelle Classification des Types de Cutis Laxa<\/h3>
Un long travail d\u2019analyse des diff\u00e9rents sympt\u00f4mes de tous\u2026<\/div>mars 18, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Ils nous ont quitt\u00e9s<\/h3>
 
\r\nNous sommes si tristes, notre Grande Famille Cutis Laxa\u2026<\/div>mars 18, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Nouveaux malades, Nouvelles Familles<\/h3>
Sara et sa s\u0153ur Abeer, Bennett, Tucker, Eileen, Youssef, Ella,\u2026<\/div>mars 18, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Transmission et tests durant la grossesse en cas de maladie g\u00e9n\u00e9tique<\/h3>
Dr Candy KUMPS et Dr Sofie SYMOENS
\r\nVoir la pr\u00e9sentation
\r\nPour\u2026<\/div>mars 17, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Physioth\u00e9rapie et Cutis Laxa<\/h3>
Dr Inge DEWANDELE
\r\nVoir la pr\u00e9sentation
\r\nNos articulations\u2026<\/div>mars 17, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Etude sur la T\u00e9l\u00e9expertise en dermatologie dans une r\u00e9gion de France<\/h3>
T\u00e9l\u00e9Expertise en dermatologie
\r\nMarie-Claude Boiteux a men\u00e9\u2026<\/div>mars 16, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Les troubles ophtalmologiques dans la Cutis Laxa<\/h3>
Dr Lana HOEBEKE
\r\nVoir la pr\u00e9sentation\u00a0
\r\nLes Fibres Elastiques\u2026<\/div>mars 16, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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La Tropo\u00e9lastine pour traiter les maladies des fibres \u00e9lastiques ?<\/h3>
Dr Romain DEBRET
\r\nVoir la pr\u00e9sentation
\r\nIl y a 25 ans lorsque\u2026<\/div>mars 15, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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La Mappemonde des Rares<\/h3>
28 F\u00e9vrier\u00a0
\r\nA l'occasion de la Journ\u00e9e des Maladies Rares\u2026<\/div>f\u00e9vrier 28, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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LE PARCOURS DU PATIENT CUTIS LAXA<\/h3>
NOUVEAUX PARCOURS DU PATIENT
\r\nNous avons d\u00e9velopp\u00e9 2 parcours\u2026<\/div>f\u00e9vrier 15, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Po\u00e8me pour une malade diagnostiqu\u00e9e Cutis Laxa<\/h3>
On lui avait dit que ce serait difficile
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\r\nOn lui avait laiss\u00e9\u2026<\/div>f\u00e9vrier 3, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Il y a 25 ans…….<\/h3>
\u00c9mission phare des ann\u00e9es 1990 et 2000, \u00ab\u00a0\u00c7a se discute\u00a0\u00bb\u2026<\/div>f\u00e9vrier 3, 2026<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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R\u00e9union Annuelle ERN-Skin<\/h3>
11-12 D\u00e9cembre
\r\nLes membres de ERN-Skin se sont retrouv\u00e9s\u2026<\/div>d\u00e9cembre 15, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Et dans la presse………..<\/h3>
8 Octobre\u00a0:
\r\nCommuniqu\u00e9 de presse Doctissimo\u00a0:
\r\n\u00ab\u00a0Maladies\u2026<\/div>d\u00e9cembre 8, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Journ\u00e9es Dermatologiques de Paris<\/h3>
2 D\u00e9cembre
\r\nLa 7e Conf\u00e9rence de la F\u00e9d\u00e9ration Fran\u00e7aise\u2026<\/div>d\u00e9cembre 6, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Triathlon de Sireuil<\/h3>
Le 21 November 2025,
\r\nLa ville de Sireuil nous a remis un ch\u00e8que\u2026<\/div>novembre 30, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Le r\u00f4le des ERN dans le renforcement de la comp\u00e9titivit\u00e9 de l’UE<\/h3>
Together for Rare Diseases (Together4RD) a publi\u00e9 un rapport\u2026<\/div>novembre 25, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a><\/div>