{"id":3704,"date":"2019-01-18T15:48:02","date_gmt":"2019-01-18T15:48:02","guid":{"rendered":"http:\/\/www.cutislaxa.org\/a-propos\/association-links\/"},"modified":"2026-03-23T15:26:45","modified_gmt":"2026-03-23T14:26:45","slug":"association-links","status":"publish","type":"page","link":"https:\/\/www.cutislaxa.org\/fr\/a-propos\/association-links\/","title":{"rendered":"Associations &#038; liens"},"content":{"rendered":"<div id='av_section_1'  class='avia-section main_color avia-section-large avia-no-border-styling  avia-bg-style-scroll  avia-builder-el-0  avia-builder-el-no-sibling   container_wrap fullsize' style=' '  ><div class='container' ><main  role=\"main\" itemprop=\"mainContentOfPage\"  class='template-page content  av-content-full alpha units'><div class='post-entry post-entry-type-page post-entry-3704'><div class='entry-content-wrapper clearfix'>\n<div  style='padding-bottom:30px; font-size:70px;' class='av-special-heading av-special-heading-h1  blockquote modern-quote  avia-builder-el-1  el_before_av_one_full  avia-builder-el-first  av-inherit-size '><h1 class='av-special-heading-tag '  itemprop=\"headline\"  >Associations et liens<\/h1><div class='special-heading-border'><div class='special-heading-inner-border' ><\/div><\/div><\/div>\n<div class=\"flex_column av_one_full  flex_column_div av-zero-column-padding first  avia-builder-el-2  el_after_av_heading  avia-builder-el-last  \" style='border-radius:0px; '><p><section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '  style='font-size:18px; '  itemprop=\"text\" ><p>Le plus gros probl\u00e8me rencontr\u00e9 par les Associations de Maladies Rares consiste dans le peu de moyens dont elles disposent. Mettre en commun ces moyens permet de les optimiser. Nous sommes en relation avec, ou avons adh\u00e9r\u00e9 \u00e0 des\u00a0 Associations , \u00e0 des Organismes. Mais il y a \u00e9galement un certain nombre de sites \u00ab\u00a0amis\u00a0\u00bb qui parlent de nous\u00a0:<\/p>\n<h4><\/h4>\n<\/div><\/section><br \/>\n<section class=\"av_textblock_section \"  itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock  '   itemprop=\"text\" ><h1><\/h1>\n<h4><strong>EN FRANCE<\/strong><\/h4>\n<ul>\n<li><strong>Alliance Maladies Rares\u00a0:\u00a0<\/strong> <a href=\"https:\/\/www.alliance-maladies-rares.org\">www.alliance-maladies-rares.org<\/a>\u00a0\u00a0 e-mail\u00a0: <a href=\"mailto:contact@maladiesrares.org\">contact@maladiesrares.org \u00a0<\/a>\u00a0 \u00a0Tel\u00a0: (33) (0)1 56 53 53 40<\/li>\n<li><strong>Fondation Ren\u00e9 Touraine :<\/strong> <a href=\"https:\/\/fondation-r-touraine.org\/\">https:\/\/fondation-r-touraine.org\/<\/a><\/li>\n<li><strong>France ADOT<\/strong> (Association Fran\u00e7aise de don d&rsquo;Organe) :\u00a0 <a href=\"http:\/\/www.france-adot.org\">www.france-adot.org<\/a><\/li>\n<li><strong>F\u00e9d\u00e9ration Fran\u00e7aise de la Peau (FFP) : <\/strong><a href=\"https:\/\/francepeau.com\/\">https:\/\/francepeau.com\/<\/a><\/li>\n<li><strong>Handicap.fr :<\/strong>\u00a0\u00a0<a href=\"http:\/\/www.handicap.fr\">www.handicap.fr<\/a> email : <a href=\"mailto:info@handicap.fr\">info@handicap.fr\u00a0<\/a>\u00a0\u00a0&#8211;<\/li>\n<li><strong>Maladies Rares Info Services\u00a0:\u00a0<\/strong>(ligne d&rsquo;\u00e9coute et informations sur les maladies rares)\u00a0 \u00a0 Tel :\u00a0 +33 156 538 136\u00a0 &#8211; <a href=\"https:\/\/www.maladiesraresinfo.org\">https:\/\/www.maladiesraresinfo.org<\/a> &#8211; e-mail : <a href=\"https:\/\/maladiesraresinfo.org\/nous-contacter.html\">https:\/\/maladiesraresinfo.org\/nous-contacter.html\u00a0<\/a><\/li>\n<li><strong>Orphanet\u00a0:<\/strong>\u00a0 \u00a0<a href=\"https:\/\/www.orpha.net\">https:\/\/www.orpha.net\u00a0<\/a>\u00a0 e-mail : <a href=\"mailto:contact.orphanet@inserm.fr\">contact.orphanet@inserm.fr\u00a0<\/a> <a href=\"https:\/\/www.orpha.net\/en\/institutions\/get-in-touch\">https:\/\/www.orpha.net\/en\/institutions\/get-in-touch<\/a><\/li>\n<li>\u00a0<strong>Fili\u00e8re Maladies Rares Dermatologiques\u00a0(FIMARAD) :\u00a0<\/strong>&#8211; <a href=\"https:\/\/fimarad.org\/\">https:\/\/fimarad.org\/<\/a>\u00a0 \u00a0<a href=\"mailto:contact@fimarad.org\"> Email : contact@fimarad.org <\/a>\u00a0\u00a0&#8211; T\u00e9l. :+33 1 44 49 25 82\u00a0 -Necker University Hospital &#8211; 149 rue de S\u00e8vres &#8211; 75015 Paris Cedex<\/li>\n<li><strong>Solidarit\u00e9 Handicap \u00ab\u00a0autour des maladies rares\u00a0\u00bb\u00a0 : <\/strong><a href=\"https:\/\/www.solhand.org\">https:\/\/www.solhand.org<\/a><\/li>\n<\/ul>\n<h4>EN EUROPE<\/h4>\n<ul>\n<li><strong>ERN-Skin, R\u00e9seau Europ\u00e9en de R\u00e9f\u00e9rence-Peau: <\/strong><a href=\"https:\/\/ern-skin.eu\/\">https:\/\/ern-skin.eu\/<\/a><\/li>\n<li><strong>Eurordis : <\/strong>\u00a0<a href=\"http:\/\/www.eurordis.org\">www.eurordis.org<\/a>\u00a0 \u00a0e-mail : <a href=\"mailto:eurordis@eurordis.org\">eurordis@eurordis.org<\/a> \u00a096, rue Didot &#8211; 75014 PARIS\u00a0 Tel : +33 1 56 53 52 10<\/li>\n<\/ul>\n<h4><strong>DANS LE MONDE<\/strong><\/h4>\n<ul>\n<li><strong>Contact:Fondation des Familles avec enfant handicap\u00e9 (UK):<\/strong> <a href=\"https:\/\/contact.org.uk\/\">https:\/\/contact.org.uk\/\u00a0<\/a><\/li>\n<li><strong>GeneticAlliance (USA):<\/strong>\u00a0 <a href=\"https:\/\/geneticalliance.org\">https:\/\/geneticalliance.org<\/a>\u00a0 e-mail : <a href=\"mailto:info@geneticalliance.org\">info@geneticalliance.org<\/a><\/li>\n<li><strong>GLOBALSKIN (Alliance Internationale des Associations de Maladies Dermatologiques) : <\/strong><a href=\"https:\/\/globalskin.org\/\">https:\/\/globalskin.org\/<\/a> email : <a href=\"https:\/\/globalskin.org\/contact-us\">https:\/\/globalskin.org\/contact-us<\/a><\/li>\n<li><strong>Organisation Nationale des Maladies Rares (NORD) (USA) :<\/strong> <a href=\"http:\/\/www.rarediseases.org\">www.rarediseases.org<\/a>\u00a0 e-mail : <a href=\"mailto:orphan@rarediseases.org\">orphan@rarediseases.org<\/a><\/li>\n<li><strong>Maladies Rares International (RDI):<\/strong> \u00a0<a href=\"http:\/\/www.rarediseasesinternational.org\">www.rarediseasesinternational.org<\/a><\/li>\n<li><strong>ThinkGenetic\u00a0: \u00a0<\/strong><a href=\"https:\/\/thinkgenetic.org\/\"> https:\/\/thinkgenetic.org\/<\/a> email <a href=\"mailto:info@thinkgenetic.org\">info@thinkgenetic.org<\/a><\/li>\n<\/ul>\n<\/div><\/section><\/p><\/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-3704","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Associations &amp; 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