{"id":4623,"date":"2024-07-22T23:26:50","date_gmt":"2024-07-22T23:26:50","guid":{"rendered":"https:\/\/irarecentres.org\/sources-dinformation-sur-les-maladies-rares\/"},"modified":"2025-02-03T13:00:46","modified_gmt":"2025-02-03T13:00:46","slug":"sources-dinformation-sur-les-maladies-rares","status":"publish","type":"page","link":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/","title":{"rendered":"Sources d&rsquo;information sur les maladies rares"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"4623\" class=\"elementor elementor-4623 elementor-2695\">\n\t\t\t\t<div class=\"elementor-element elementor-element-719dfb4 e-flex e-con-boxed e-con e-parent\" data-id=\"719dfb4\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5079726 elementor-widget elementor-widget-spacer\" data-id=\"5079726\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-f34317b e-flex e-con-boxed e-con e-parent\" data-id=\"f34317b\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5836a5b elementor-widget elementor-widget-spacer\" data-id=\"5836a5b\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e59516e elementor-widget elementor-widget-heading\" data-id=\"e59516e\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Sources d'information sur les maladies rares<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-88151b9 elementor-widget elementor-widget-spacer\" data-id=\"88151b9\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b4c53b6 e-flex e-con-boxed e-con e-parent\" data-id=\"b4c53b6\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-69d9f03 elementor-widget elementor-widget-text-editor\" data-id=\"69d9f03\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>Nous vous orientons vers les sites officiels les plus importants pour trouver des informations et des ressources fiables sur les maladies rares. Si vous ne trouvez pas l&rsquo;information que vous cherchez ou si vous souhaitez \u00eatre orient\u00e9 vers des ressources au Canada, contactez notre <a href=\"\" target=\"\" rel=\"\">Centre iRARE<\/a>. <\/strong><\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-493ca36 elementor-widget elementor-widget-spacer\" data-id=\"493ca36\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7984ead elementor-widget elementor-widget-text-editor\" data-id=\"7984ead\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6d53277 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6d53277\" data-element_type=\"section\">\n<div class=\"elementor-container elementor-column-gap-default\">\n<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-e4e0ae5\" data-id=\"e4e0ae5\" data-element_type=\"column\">\n<div class=\"elementor-widget-wrap elementor-element-populated\">\n<div class=\"elementor-element elementor-element-cf98b73 elementor-widget elementor-widget-heading\" data-id=\"cf98b73\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n<div class=\"elementor-widget-container\">\n<h4 class=\"elementor-heading-title elementor-size-default\"><a href=\"http:\/\/www.orpha.net\" target=\"_blank\" rel=\"noopener\">Orphanet <\/a><\/h4>\n<h4><a href=\"https:\/\/www.orpha.net\/fr\" target=\"_blank\" rel=\"noopener\">www.orpha.net<\/a><\/h4>\n<p class=\"elementor-heading-title elementor-size-default\">Le portail des maladies rares et des m\u00e9dicaments orphelins. Pour le grand public et les professionnels. Plus de 6 000 maladies rares r\u00e9pertori\u00e9es. Informations en neuf (9) langues, <strong>dont le fran\u00e7ais<\/strong>. Ressources dans plus de 40 pays (le Canada a particip\u00e9 dans le pass\u00e9 ; le portail contient quelques informations).    <\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6d01712 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6d01712\" data-element_type=\"section\">\n<div class=\"elementor-container elementor-column-gap-default\">\n<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-f99ab3a\" data-id=\"f99ab3a\" data-element_type=\"column\">\n<div class=\"elementor-widget-wrap elementor-element-populated\">\n<div class=\"elementor-element elementor-element-e3ce754 elementor-widget elementor-widget-text-editor\" data-id=\"e3ce754\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n<div class=\"elementor-widget-container\">\n<p>Pour chaque maladie, vous pourrez trouver ces ressources : <\/p>\n<ul>\n<li>Centres experts<\/li>\n<li>Organisations de patients<\/li>\n<li>M\u00e9dicaments orphelins<\/li>\n<li>Projets de recherche<\/li>\n<li>Essais cliniques<\/li>\n<li>Registres\/biobanques\/r\u00e9seaux de recherche<\/li>\n<li>Laboratoires pour tests diagnostics<\/li>\n<\/ul>\n<p>Et les documents suivants :<\/p>\n<ul>\n<li>Signes et sympt\u00f4mes<\/li>\n<li>Articles pour le grand public<\/li>\n<li>Recommandations pour la pratique clinique<\/li>\n<li>Proc\u00e9dures d&rsquo;urgence<\/li>\n<li>Handicap : informations sur les limitations d&rsquo;activit\u00e9 (incapacit\u00e9s)<\/li>\n<li>Recommandations pour l&rsquo;anesth\u00e9sie<\/li>\n<li>Informations sur un m\u00e9dicament<\/li>\n<\/ul>\n<p>Vous pouvez \u00e9galement t\u00e9l\u00e9charger l&rsquo;application <a href=\"https:\/\/orphanetguides.orphanet.app\/Orphanet_rdk_fr.htm\" target=\"_blank\" rel=\"noopener\"><strong>l&rsquo;application Orphanet <\/strong><\/a>en six langues (iPhone ou iPad) et la s\u00e9rie de rapports <a href=\"https:\/\/www.orpha.net\/fr\/other-information\/reports\" target=\"_blank\" rel=\"noopener\"><strong>s\u00e9rie de rapports Orphanet.<\/strong><\/a><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/section>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c3072b8 elementor-widget elementor-widget-text-editor\" data-id=\"c3072b8\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h4>Autres sources d&rsquo;information<\/h4>\n<ul>\n<li><a href=\"http:\/\/rarediseases.info.nih.gov\/GARD\/Default.aspx\" target=\"_blank\" rel=\"noopener\">Centre d&rsquo;information sur les maladies g\u00e9n\u00e9tiques et rares (GARD)<\/a><\/li>\n<li><a href=\"https:\/\/www.diseaseinfosearch.org\/\" target=\"_blank\" rel=\"noopener\">Recherche d&rsquo;informations sur les maladies<\/a><\/li>\n<li><a href=\"https:\/\/rarediseases.org\/rare-diseases\/\" target=\"_blank\" rel=\"noopener\">Rare Disease Database<\/a> (National Organization for Rare Disorders)<\/li>\n<li><a href=\"https:\/\/www.merckmanuals.com\/fr-ca\/accueil\" target=\"_blank\" rel=\"noopener\">Manuels du consommateur Merck<\/a><\/li>\n<li><a href=\"https:\/\/www.filieresmaladiesrares.fr\/les-23-filieres\/\" target=\"_blank\" rel=\"noopener\">Fili\u00e8re Sant\u00e9 Maladies Rares<\/a> (France)<\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK430685\/\">StatPearls &#8211; Biblioth\u00e8que du NCBI (nih.gov)<\/a><\/li>\n<\/ul>\n<h4>G\u00e9n\u00e9tique<\/h4>\n<p>Informations<\/p>\n<ul>\n<li><span lang=\"EN-CA\"><a href=\"https:\/\/geneticseducation.ca\/\" target=\"_blank\" rel=\"noopener\">Genetics Education Canada : Knowledge Organisation<\/a> (GECKO)<\/span><\/li>\n<li><a href=\"https:\/\/medlineplus.gov\/genetics\/understanding\/\" target=\"_blank\" rel=\"noopener\">Aidez-moi \u00e0 comprendre la g\u00e9n\u00e9tique<\/a><\/li>\n<li><a href=\"https:\/\/genepeople.org.uk\/beginners-guide-to-genetics\/\" target=\"_blank\" rel=\"noopener\">Guide du d\u00e9butant en g\u00e9n\u00e9tique<\/a><\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK115568\/\" target=\"_blank\" rel=\"noopener\">G\u00e9n\u00e9tique 101<\/a><\/li>\n<\/ul>\n<p>Bases de donn\u00e9es sur les maladies g\u00e9n\u00e9tiques, les g\u00e8nes et les tests g\u00e9n\u00e9tiques<\/p>\n<ul>\n<li><a href=\"https:\/\/medlineplus.gov\/genetics\/condition\/\" target=\"_blank\" rel=\"noopener\">Medline Plus &#8211; Affections g\u00e9n\u00e9tiques<\/a><\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK1116\/\" target=\"_blank\" rel=\"noopener\">GeneReviews<\/a><\/li>\n<li><a href=\"http:\/\/www.ncbi.nlm.nih.gov\/books\/NBK22183\/\" target=\"_blank\" rel=\"noopener\">Genes and Disease<\/a> (National Center for Biotechnology Information)<\/li>\n<li><a href=\"http:\/\/www.ncbi.nlm.nih.gov\/sites\/entrez?db=omim\" target=\"_blank\" rel=\"noopener\">OMIM<\/a><\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/gtr\/\" target=\"_blank\" rel=\"noopener\">Registre des tests g\u00e9n\u00e9tiques<\/a><\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/gene\" target=\"_blank\" rel=\"noopener\">Base de donn\u00e9es de g\u00e8nes<\/a><\/li>\n<\/ul>\n<h4>Experts et centres d&rsquo;expertise<\/h4>\n<ul>\n<li><a href=\"https:\/\/findexpertmd.com\/Patient\" target=\"_blank\" rel=\"noopener\">TrouverExpertMD<\/a><\/li>\n<li><a href=\"https:\/\/www.orpha.net\/en\/expert-centres\" target=\"_blank\" rel=\"noopener\">L&rsquo;annuaire des centres d&rsquo;expertise d&rsquo;Orphanet<\/a><\/li>\n<li>Les 23 <a href=\"https:\/\/www.filieresmaladiesrares.fr\/les-23-filieres\/\" target=\"_blank\" rel=\"noopener\">\u00ab\u00a0Fili\u00e8res Sant\u00e9 Maladies rares\u00a0\u00bb<\/a> (France) : un r\u00e9seau de milliers de Centres de r\u00e9f\u00e9rence en France<\/li>\n<\/ul>\n<h4>Projets de recherche et essais cliniques<\/h4>\n<ul>\n<li>Essais cliniques dans le monde entier (y compris au Canada) : <a href=\"https:\/\/classic.clinicaltrials.gov\/\" target=\"_blank\" rel=\"noopener\">ClinicalTrials.gov<\/a><\/li>\n<li>Inscrivez-vous \u00e0 un essai clinique au Canada : <a href=\"https:\/\/www.viperclinicaltrials.com\/\" target=\"_blank\" rel=\"noopener\">VIPeR<\/a><\/li>\n<li><a href=\"https:\/\/www.orpha.net\/fr\/research-trials\/research-projects\" target=\"_blank\" rel=\"noopener\">Orphanet : projets de recherche et essais cliniques<\/a><\/li>\n<li><a href=\"https:\/\/health-products.canada.ca\/ctdb-bdec\/?lang=fre\" target=\"_blank\" rel=\"noopener\">Recherche d&rsquo;essais cliniques au Canada<\/a><\/li>\n<li><a href=\"https:\/\/recherchecliniquequebec.com\/registre-essais-cliniques\/\" target=\"_blank\" rel=\"noopener\">Registre public des essais cliniques<\/a> &#8211; Recherche clinique Qu\u00e9bec<\/li>\n<li><a href=\"https:\/\/euclinicaltrials.eu\/\">Essais cliniques dans l&rsquo;Union europ\u00e9enne &#8211; EMA (euclinicaltrials.eu)<\/a><\/li>\n<li><a href=\"https:\/\/trialsearch.who.int\/\" target=\"_blank\" rel=\"noopener\">International Clinical Trials Registry Platform<\/a><\/li>\n<\/ul>\n<h4>Registres de patients<\/h4>\n<ul>\n<li><a href=\"https:\/\/www.cda-amc.ca\/inventory-rare-disease-registries-canadian-landscape\" target=\"_blank\" rel=\"noopener\">Inventaire des registres canadiens<\/a> (CDA)<\/li>\n<li><a href=\"https:\/\/www.orpha.net\/fr\/research-trials\/research-projects\" target=\"_blank\" rel=\"noopener\">Registres Orphanet<\/a><\/li>\n<li><a href=\"http:\/\/clinicaltrials.gov\/\" target=\"_blank\" rel=\"noopener\">ClinicalTrials.gov<\/a> (des registres de recherche sont r\u00e9pertori\u00e9s sur ce site)<\/li>\n<li>Registres dans lesquels les patients peuvent s&rsquo;inscrire eux-m\u00eames : voir le <a href=\"https:\/\/drive.google.com\/file\/d\/1htVQ-aqVE9ap60mHKXRmI7U2UOQurD-l\/view\" target=\"_blank\" rel=\"noopener\">r\u00e9pertoire des registres de maladies rares<\/a> du RQMO.<\/li>\n<\/ul>\n<h4>Articles et ouvrages scientifiques<\/h4>\n<ul>\n<li class=\"tabulation\"><a href=\"http:\/\/www.ncbi.nlm.nih.gov\/pmc\/\" target=\"_blank\" rel=\"noopener\">Pubmed Central<\/a> (articles scientifiques en libre acc\u00e8s)<\/li>\n<li class=\"tabulation\"><a href=\"http:\/\/www.ncbi.nlm.nih.gov\/sites\/entrez?db=pubmed\" target=\"_blank\" rel=\"noopener\">PubMed<\/a> (plus complet, mais les articles ne sont pas tous en libre acc\u00e8s)<\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/browse\/#W3sic29ydCI6InB1YmRhdGUifSx7InNvcnRfZGlyZWN0aW9uIjoicmV2ZXJzZSJ9LHsiY3NyZi10b2tlbiI6IjA3OTNERjA2NDZFMDBGRjNfMjQ3MzVTSUQifV0=\" target=\"_blank\" rel=\"noopener\">Biblioth\u00e8que<\/a><\/li>\n<li><a href=\"https:\/\/ojrd.biomedcentral.com\/#:~:text=Orphanet%20Journal%20of%20Rare%20Diseases%20is%20an%20open,journal%20publishes%20high-quality%20reviews%20on%20specific%20rare%20diseases.\" target=\"_blank\" rel=\"noopener\">Journal Orphanet des maladies rares<\/a><\/li>\n<li><a href=\"https:\/\/www.springer.com\/journal\/44162\" target=\"_blank\" rel=\"noopener\">Journal des maladies rares<\/a><\/li>\n<li><a href=\"https:\/\/raredisorders.imedpub.com\/\">Journal Rare Disorders : Diagnostic et th\u00e9rapie<\/a><\/li>\n<li><a href=\"https:\/\/www.sciencedirect.com\/journal\/rare\/vol\/1\/suppl\/C\" target=\"_blank\" rel=\"noopener\">Rare<\/a><\/li>\n<li><a href=\"https:\/\/clinmedjournals.org\/international-journal-of-rare-diseases-and-disorders.php\" target=\"_blank\" rel=\"noopener\">Journal international des maladies et troubles rares<\/a><\/li>\n<\/ul>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a6520d7 elementor-widget elementor-widget-text-editor\" data-id=\"a6520d7\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h4>Informations sur les m\u00e9dicaments pour les maladies rares<\/h4>\n<ul>\n<li><a href=\"https:\/\/www.canada.ca\/fr\/sante-canada\/services\/medicaments-produits-sante.html\" target=\"_blank\" rel=\"noopener\">M\u00e9dicaments et produits de sant\u00e9 <\/a>(Sant\u00e9 Canada)<\/li>\n<li><a href=\"https:\/\/www.canada.ca\/fr\/sante-canada\/services\/medicaments-produits-sante\/medicaments\/base-donnees-produits-pharmaceutiques.html\" target=\"_blank\" rel=\"noopener\">Base de donn\u00e9es des produits pharmaceutiques<\/a> de Sant\u00e9 Canada.<\/li>\n<li>\u00c9tats-Unis (Food and Drug Administration) : <a href=\"https:\/\/www.accessdata.fda.gov\/scripts\/opdlisting\/oopd\/index.cfm\" target=\"_blank\" rel=\"noopener\">Orphan Drug Designations and Approvals<br \/><\/a><\/li>\n<li>Europe (Agence europ\u00e9enne des m\u00e9dicaments) : <a href=\"https:\/\/ec.europa.eu\/health\/documents\/community-register\/html\/reg_od_act.htm?sort=a\" target=\"_blank\" rel=\"noopener\">Community Register of Orphan Medicinal Products<br \/><\/a><\/li>\n<li>Orphanet : <a href=\"https:\/\/www.orpha.net\/en\/drug\" target=\"_blank\" rel=\"noopener\">Par nom de maladie <\/a> <a href=\"https:\/\/www.orpha.net\/en\/drug\/trade_substance\" target=\"_blank\" rel=\"noopener\">Par nom de m\u00e9dicament<\/a><\/li>\n<\/ul>\n<p>Voir notre page web : \u00ab\u00a0<a href=\"https:\/\/irarecentres.org\/fr\/traitements\/\" target=\"_blank\" rel=\"noopener\">Traitements<\/a>\u00ab\u00a0<\/p>\n<p>Industrie pharmaceutique<\/p>\n<ul>\n<li><a href=\"https:\/\/fr.rarei.ca\/\" target=\"_blank\" rel=\"noopener\">Le Forum canadien des innovateurs dans le domaine des maladies rares (rarei.ca)<\/a><\/li>\n<li><a href=\"https:\/\/innovativemedicines.ca\/fr\/\" target=\"_blank\" rel=\"noopener\">M\u00e9dicaments innovants Canada<\/a>\n<ul>\n<li><a href=\"https:\/\/innovativemedicines.ca\/fr\/a-propos\/ethique\/\" target=\"_blank\" rel=\"noopener\">Code de d\u00e9ontologie<\/a><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-19caa08 elementor-widget elementor-widget-text-editor\" data-id=\"19caa08\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h4>Organisations dans le domaine des maladies rares et orphelines<\/h4>\n<p>Canada<\/p>\n<ul>\n<li><a href=\"http:\/\/www.raredisorders.ca\/\" target=\"_blank\" rel=\"noopener\">Canadian Organiztion for Rare Disorders (CORD)<\/a><\/li>\n<li><a href=\"https:\/\/rqmo.org\/en\/\" target=\"_blank\" rel=\"noopener\">Regroupement qu\u00e9b\u00e9cois des maladies orphelines\/Quebec Coalition of Orphan Diseases<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseasefoundation.org\/\" target=\"_blank\" rel=\"noopener\">B.C. Rare Disease Foundation<\/a><\/li>\n<li><a href=\"https:\/\/rdna.ca\/support-for-rare-disease\/\">Rare Disease Network of Alberta<\/a><\/li>\n<li><a href=\"https:\/\/canadianrdn.ca\/\" target=\"_blank\" rel=\"noopener\">R\u00e9seau canadien des maladies rares<\/a><\/li>\n<\/ul>\n<p>Autres pays<\/p>\n<ul>\n<li><a href=\"https:\/\/www.eurordis.org\/fr\/\" target=\"_blank\" rel=\"noopener\">EURORDIS<\/a> (Europe)<\/li>\n<li><a href=\"http:\/\/www.alliance-maladies-rares.org\/\" target=\"_blank\" rel=\"noopener\">Alliance Maladies Rares<\/a> (France)<\/li>\n<li class=\"ds-c-list__list-item\"><a href=\"http:\/\/www.maladiesraresinfo.org\/\" target=\"_blank\" rel=\"noopener\">Maladies rares info services<\/a> (France)<\/li>\n<li><a href=\"http:\/\/www.rarediseases.org\/\" target=\"_blank\" rel=\"noopener\">National Organization for Rare Disorders (NORD)<\/a> (\u00c9tats-Unis)<\/li>\n<li><a href=\"http:\/\/www.geneticalliance.org\/\" target=\"_blank\" rel=\"noopener\">Genetic Alliance<\/a> (\u00c9tats-Unis)<\/li>\n<li><a href=\"https:\/\/globalgenes.org\/\" target=\"_blank\" rel=\"noopener\">Global Genes<\/a> (\u00c9tats-Unis)<\/li>\n<li><a href=\"http:\/\/www.geneticalliance.org.uk\/\" target=\"_blank\" rel=\"noopener\">Genetic Alliance<\/a> (Royaume-Uni)<\/li>\n<li><a href=\"https:\/\/www.rarediseasesinternational.org\/\" target=\"_blank\" rel=\"noopener\">Rare Diseases International<\/a><\/li>\n<\/ul>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-ddb2380 e-flex e-con-boxed e-con e-parent\" data-id=\"ddb2380\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-83af026 elementor-widget elementor-widget-text-editor\" data-id=\"83af026\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h4>Pour les professionnels de la sant\u00e9<\/h4><ul><li><a href=\"https:\/\/www.raredigmcgill.com\/\" target=\"_blank\" rel=\"noopener\">Rare Disease Interest Group<\/a> (\u00e9tudiants de m\u00e9decine, Universit\u00e9 McGill)<\/li><li><a href=\"https:\/\/www.m4rd.org\/\" target=\"_blank\" rel=\"noopener\">Medics 4 Maladies rares <\/a><\/li><li><a href=\"https:\/\/globalgenes.org\/participate\/rare-compassion-program\/\" target=\"_blank\" rel=\"noopener\">Rare Compassion Program<\/a> de Global Genes (pour les \u00e9tudiants en m\u00e9decine)<\/li><li><a href=\"https:\/\/rarediseases.org\/living-with-a-rare-disease\/continuing-medical-education-cme\/\" target=\"_blank\" rel=\"noopener\">Continuing Medical Education Program<\/a> de National Organization for Rare Disorders (NORD)<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Sources d&rsquo;information sur les maladies rares Nous vous orientons vers les sites officiels les plus importants pour trouver des informations et des ressources fiables sur les maladies rares. Si vous ne trouvez pas l&rsquo;information que vous cherchez ou si vous souhaitez \u00eatre orient\u00e9 vers des ressources au Canada, contactez notre Centre iRARE. Orphanet www.orpha.net Le [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_uag_custom_page_level_css":"","site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-4623","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Sources d&#039;information sur les maladies rares - iRare Centres<\/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:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Sources d&#039;information sur les maladies rares - iRare Centres\" \/>\n<meta property=\"og:description\" content=\"Sources d&rsquo;information sur les maladies rares Nous vous orientons vers les sites officiels les plus importants pour trouver des informations et des ressources fiables sur les maladies rares. Si vous ne trouvez pas l&rsquo;information que vous cherchez ou si vous souhaitez \u00eatre orient\u00e9 vers des ressources au Canada, contactez notre Centre iRARE. Orphanet www.orpha.net Le [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"iRare Centres\" \/>\n<meta property=\"article:modified_time\" content=\"2025-02-03T13:00:46+00:00\" \/>\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:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/\",\"url\":\"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/\",\"name\":\"Sources d'information sur les maladies rares - iRare Centres\",\"isPartOf\":{\"@id\":\"https:\/\/irarecentres.org\/#website\"},\"datePublished\":\"2024-07-22T23:26:50+00:00\",\"dateModified\":\"2025-02-03T13:00:46+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\/\/irarecentres.org\/fr\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Sources d&#8217;information sur les maladies rares\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/irarecentres.org\/#website\",\"url\":\"https:\/\/irarecentres.org\/\",\"name\":\"iRare Centres\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/irarecentres.org\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/irarecentres.org\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/irarecentres.org\/#organization\",\"name\":\"iRare Centres\",\"url\":\"https:\/\/irarecentres.org\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/irarecentres.org\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/irarecentres.org\/wp-content\/uploads\/2024\/08\/cropped-Logo-anglais-3.png\",\"contentUrl\":\"https:\/\/irarecentres.org\/wp-content\/uploads\/2024\/08\/cropped-Logo-anglais-3.png\",\"width\":329,\"height\":165,\"caption\":\"iRare Centres\"},\"image\":{\"@id\":\"https:\/\/irarecentres.org\/#\/schema\/logo\/image\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Sources d'information sur les maladies rares - iRare Centres","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/","og_locale":"fr_FR","og_type":"article","og_title":"Sources d'information sur les maladies rares - iRare Centres","og_description":"Sources d&rsquo;information sur les maladies rares Nous vous orientons vers les sites officiels les plus importants pour trouver des informations et des ressources fiables sur les maladies rares. Si vous ne trouvez pas l&rsquo;information que vous cherchez ou si vous souhaitez \u00eatre orient\u00e9 vers des ressources au Canada, contactez notre Centre iRARE. Orphanet www.orpha.net Le [&hellip;]","og_url":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/","og_site_name":"iRare Centres","article_modified_time":"2025-02-03T13:00:46+00:00","twitter_card":"summary_large_image","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/","url":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/","name":"Sources d'information sur les maladies rares - iRare Centres","isPartOf":{"@id":"https:\/\/irarecentres.org\/#website"},"datePublished":"2024-07-22T23:26:50+00:00","dateModified":"2025-02-03T13:00:46+00:00","breadcrumb":{"@id":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/irarecentres.org\/fr\/sources-dinformation-sur-les-maladies-rares\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/irarecentres.org\/fr\/"},{"@type":"ListItem","position":2,"name":"Sources d&#8217;information sur les maladies rares"}]},{"@type":"WebSite","@id":"https:\/\/irarecentres.org\/#website","url":"https:\/\/irarecentres.org\/","name":"iRare Centres","description":"","publisher":{"@id":"https:\/\/irarecentres.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/irarecentres.org\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/irarecentres.org\/#organization","name":"iRare Centres","url":"https:\/\/irarecentres.org\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/irarecentres.org\/#\/schema\/logo\/image\/","url":"https:\/\/irarecentres.org\/wp-content\/uploads\/2024\/08\/cropped-Logo-anglais-3.png","contentUrl":"https:\/\/irarecentres.org\/wp-content\/uploads\/2024\/08\/cropped-Logo-anglais-3.png","width":329,"height":165,"caption":"iRare Centres"},"image":{"@id":"https:\/\/irarecentres.org\/#\/schema\/logo\/image\/"}}]}},"uagb_featured_image_src":{"full":false,"thumbnail":false,"medium":false,"medium_large":false,"large":false,"1536x1536":false,"2048x2048":false},"uagb_author_info":{"display_name":"admin","author_link":"https:\/\/irarecentres.org\/fr\/author\/admin\/"},"uagb_comment_info":0,"uagb_excerpt":"Sources d&rsquo;information sur les maladies rares Nous vous orientons vers les sites officiels les plus importants pour trouver des informations et des ressources fiables sur les maladies rares. Si vous ne trouvez pas l&rsquo;information que vous cherchez ou si vous souhaitez \u00eatre orient\u00e9 vers des ressources au Canada, contactez notre Centre iRARE. Orphanet www.orpha.net Le\u2026","_links":{"self":[{"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/pages\/4623","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/comments?post=4623"}],"version-history":[{"count":4,"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/pages\/4623\/revisions"}],"predecessor-version":[{"id":5560,"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/pages\/4623\/revisions\/5560"}],"wp:attachment":[{"href":"https:\/\/irarecentres.org\/fr\/wp-json\/wp\/v2\/media?parent=4623"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}