{"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> 8 <\/small><\/span><\/a>\/<\/span>M\u00e9dias<\/span> 6 <\/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> 12 <\/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> 16 <\/small><\/span><\/a>\/<\/span>Rencontres, \u00e9v\u00e9nements et manifestations<\/span> 12 <\/small><\/span><\/a>\/<\/span>Vid\u00e9o<\/span> 1 <\/small><\/span><\/a><\/div><\/div>
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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
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\r\nCe type de Cutis Laxa reste aujourd\u2019hui\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\nPour toutes les jeunes personnes\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\nNos articulations permettent \u00e0 notre corps\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\nLes Fibres Elastiques sont pr\u00e9sentes dans quasiment\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\nIl y a 25 ans lorsque nous avons fond\u00e9 Cutis\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>
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Glisse en Coeur<\/h3>
19 Novembre
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\r\nNous avons eu la chance et l\u2019honneur d\u2019\u00eatre\u2026<\/div>novembre 19, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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3 nouveaux plans nationaux maladies rares dans le monde<\/h3>
Ils s\u2019inscrivent tous les trois dans le contexte de\u00a0l'adoption\u2026<\/div>octobre 16, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Foire de la Saint Martin<\/h3>
16\u00a0 Novembre :\u00a0\u00a0
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\r\nLa traditionnelle Foire de la St Martin\u2026<\/div>octobre 16, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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La th\u00e9rapie de groupe cognitivo-comportementale peut-elle aider les personnes atteintes d’une maladie rare ?<\/h3>
Les personnes atteintes d'une maladie rare subissent souvent\u2026<\/div>octobre 16, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Reunion annuelle de FIMARAD<\/h3>
3 Octobre :
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\r\nla Journ\u00e9e Annuelle Fimarad permet de faire\u2026<\/div>octobre 3, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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GLOBALSKIN EUROPE et EADV \u00e0 PARIS<\/h3>
16 Septembre : GLOBALSKIN
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\r\nLes membres de Globalskin Europe\u2026<\/div>septembre 25, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Une autre journ\u00e9e \u00e0 Bergame<\/h3>
13 Septembre\u00a0
\r\nNous sommes retourn\u00e9s \u00e0 Bergame pour une soir\u00e9e\u2026<\/div>septembre 13, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Nouveaux membres<\/h3>
Rebecca, Sami, Robert, Anna, Zo\u00e9, Merc\u00e9des, Sarah, Emily, Elena,\u2026<\/div>septembre 3, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Dans les M\u00e9dias<\/h3>
11 Mars :
\r\nRadio Locale \"Jordanne FM\" interview de Philippe Barri\u00e8re,\u2026<\/div>ao\u00fbt 31, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Ils nous ont quitt\u00e9s<\/h3>
H\u00e9las\u00a0! de nouveaux d\u00e9c\u00e8s nous ont endeuill\u00e9s :
\r\nNathan,\u2026<\/div>ao\u00fbt 31, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Grossesse et Planning Familial dans les Maladies rares<\/h3>
Le Journal Orphanet Journal des Maladies Rares a publi\u00e9 les\u2026<\/div>juillet 20, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Activit\u00e9s ERN-Skin<\/h3>
16 Janvier 2025 : Comit\u00e9 Ex\u00e9cutif (en ligne)
\r\nCette rencontre\u2026<\/div>juillet 10, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Handicaps et Barri\u00e8res\u00a0des maladies rares de la peau<\/h3>
Reconnaitre les handicaps et les barri\u00e8res\u00a0des maladies rares\u2026<\/div>juillet 3, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a>
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Ev\u00e8nements Sportifs en Charente…et autres (France)<\/h3>
1er MAI \u00e0 DOUZAT
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\r\nLe Comit\u00e9 des F\u00eates et l\u2019association\u2026<\/div>juin 30, 2025<\/span>\/<\/span>par Marie-Claude<\/span><\/span><\/div><\/div><\/figcaption><\/figure><\/a><\/div>