{"id":10007,"date":"2022-01-13T20:19:10","date_gmt":"2022-01-14T01:19:10","guid":{"rendered":"https:\/\/rqmo.org\/rare-disease-research\/"},"modified":"2026-02-09T18:41:20","modified_gmt":"2026-02-09T23:41:20","slug":"rare-disease-research","status":"publish","type":"page","link":"https:\/\/rqmo.org\/en\/rare-disease-research\/","title":{"rendered":"Rare Disease Research"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"10007\" class=\"elementor elementor-10007 elementor-2225\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-1ef8e90 elementor-section-content-middle elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"1ef8e90\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5fff9e7\" data-id=\"5fff9e7\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5c9d7c3 elementor-widget elementor-widget-heading\" data-id=\"5c9d7c3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Register directory<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t<div class=\"elementor-element elementor-element-464fc0c e-flex e-con-boxed e-con e-parent\" data-id=\"464fc0c\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-fe4ca16 elementor-widget elementor-widget-spacer\" data-id=\"fe4ca16\" data-element_type=\"widget\" data-e-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\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-406e80f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"406e80f\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-df046be\" data-id=\"df046be\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-d9ea818 elementor-widget elementor-widget-heading\" data-id=\"d9ea818\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">OUR REGISTRY OF INTERNATIONAL REGISTRIES<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8f02840 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"8f02840\" data-element_type=\"widget\" data-e-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>Register with a specific registry for your rare (or undiagnosed) disease. The RQMO has created a <b>directory of existing rare disease registries<\/b>. We have brought together in one place the rare disease registries in which patients or caregivers can register themselves or request to be registered. There are also some for people without a diagnosis.<\/p>\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-2cacefc elementor-widget elementor-widget-spacer\" data-id=\"2cacefc\" data-element_type=\"widget\" data-e-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-a2dcf05 elementor-align-center elementor-widget elementor-widget-button\" data-id=\"a2dcf05\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/drive.google.com\/file\/d\/1rf9oZEPHbRaWfpac1cQzJFxlwnoDeFzp\/view?usp=drive_link\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Consult our register directory<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\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<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-a3b951a\" data-id=\"a3b951a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-a70cd81 elementor-widget elementor-widget-text-editor\" data-id=\"a70cd81\" data-element_type=\"widget\" data-e-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>Sign up to advance research<\/p>\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-907ebe9 elementor-widget elementor-widget-image\" data-id=\"907ebe9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"768\" height=\"538\" src=\"https:\/\/rqmo.org\/wp-content\/uploads\/2023\/07\/Sinscrire-e1769555320157-768x538.png\" class=\"attachment-medium_large size-medium_large wp-image-10009\" alt=\"\" srcset=\"https:\/\/rqmo.org\/wp-content\/uploads\/2023\/07\/Sinscrire-e1769555320157-768x538.png 768w, https:\/\/rqmo.org\/wp-content\/uploads\/2023\/07\/Sinscrire-e1769555320157-300x210.png 300w, https:\/\/rqmo.org\/wp-content\/uploads\/2023\/07\/Sinscrire-e1769555320157.png 783w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/>\t\t\t\t\t\t\t\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<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f5549d7 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"f5549d7\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2f1ff82\" data-id=\"2f1ff82\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6a7d95b elementor-widget elementor-widget-spacer\" data-id=\"6a7d95b\" data-element_type=\"widget\" data-e-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-be9c355 elementor-widget elementor-widget-text-editor\" data-id=\"be9c355\" data-element_type=\"widget\" data-e-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>Learn more about rare disease research by visiting this international network&#8217;s website:<\/h4><h4><a href=\"http:\/\/www.irdirc.org\/\" target=\"_blank\" rel=\"noopener\">International Rare Diseases Research Consortium (IRDiRC)<\/a><\/h4>\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-fdbd665 elementor-widget elementor-widget-spacer\" data-id=\"fdbd665\" data-element_type=\"widget\" data-e-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<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-37958002 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"37958002\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-41467adf\" data-id=\"41467adf\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-504813c1 elementor-widget elementor-widget-n-accordion\" data-id=\"504813c1\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;default_state&quot;:&quot;all_collapsed&quot;,&quot;max_items_expended&quot;:&quot;one&quot;,&quot;n_accordion_animation_duration&quot;:{&quot;unit&quot;:&quot;ms&quot;,&quot;size&quot;:400,&quot;sizes&quot;:[]}}\" data-widget_type=\"nested-accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"e-n-accordion\" aria-label=\"Accordion. Open links with Enter or Space, close with Escape, and navigate with Arrow Keys\">\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-1340\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"1\" tabindex=\"0\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-1340\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> What we do for research <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><i aria-hidden=\"true\" class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t<span class='e-closed'><i aria-hidden=\"true\" class=\"fas fa-plus\"><\/i><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1340\" class=\"elementor-element elementor-element-49d2158b e-flex e-con-boxed e-con e-child\" data-id=\"49d2158b\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1340\" class=\"elementor-element elementor-element-855b791 e-con-full e-flex e-con e-child\" data-id=\"855b791\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4d29cf5 elementor-widget elementor-widget-text-editor\" data-id=\"4d29cf5\" data-element_type=\"widget\" data-e-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>One of the objects of the RQMO&#8217;s mission is to <strong>promote research on rare diseases<\/strong> and to<strong>promote exchanges between researchers and people affected or their caregivers<\/strong>. Here&#8217;s how we accomplish this part of our mission:<\/p><ul><li>We inform and answer questions from people affected by a rare disease (or from parents and caregivers) regarding the state of research on their disease.<\/li><li>We help recruit people with the condition or their caregivers to participate in academic research projects. We publish calls on our platforms for recruiting research participants.<\/li><li>We contact researchers for certain specific diseases if associations or patients\/caregivers want to advance research on their disease.<\/li><li>We participate in some research projects as consultants or partner associations.<\/li><li>We inform researchers about grants offered by rare disease organizations.<\/li><li>We write letters of support for researchers applying for grants related to rare diseases.<\/li><li>We disseminate information on our platforms on rare disease research, particularly that carried out in Quebec.<\/li><li>We have also initiated research projects for patient groups.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\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\t<\/details>\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-1341\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"2\" tabindex=\"-1\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-1341\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> Research into rare diseases <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><i aria-hidden=\"true\" class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t<span class='e-closed'><i aria-hidden=\"true\" class=\"fas fa-plus\"><\/i><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1341\" class=\"elementor-element elementor-element-75001825 e-flex e-con-boxed e-con e-child\" data-id=\"75001825\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1341\" class=\"elementor-element elementor-element-5679764 e-con-full e-flex e-con e-child\" data-id=\"5679764\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-8d03144 elementor-widget elementor-widget-image\" data-id=\"8d03144\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"300\" height=\"300\" src=\"https:\/\/rqmo.org\/wp-content\/uploads\/2021\/01\/pharma-company-template-research-300x300.jpg\" class=\"attachment-medium size-medium wp-image-665\" alt=\"\" srcset=\"https:\/\/rqmo.org\/wp-content\/uploads\/2021\/01\/pharma-company-template-research-300x300.jpg 300w, https:\/\/rqmo.org\/wp-content\/uploads\/2021\/01\/pharma-company-template-research-150x150.jpg 150w, https:\/\/rqmo.org\/wp-content\/uploads\/2021\/01\/pharma-company-template-research.jpg 600w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1341\" class=\"elementor-element elementor-element-d883eb0 e-con-full e-flex e-con e-child\" data-id=\"d883eb0\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c17640e elementor-widget elementor-widget-text-editor\" data-id=\"c17640e\" data-element_type=\"widget\" data-e-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>For many rare diseases there is little or no research and, compared to other countries, there is less in Canada. Research must be international given the small number of people affected.<\/p><p>Listen to the webinar: <strong><a href=\"https:\/\/youtu.be\/Z4zN6OE3GD8\" target=\"_blank\" rel=\"noopener\"><em>How you can participate in research on your rare disease (or an undiagnosed disease) (in French) <\/em><\/a><\/strong><\/p><h4 style=\"color: #d66127; font-family: 'Open Sans', Arial, Helvetica, sans-serif; margin-bottom: 12px; font-size: 18px; line-height: 18px; font-style: normal; text-align: left;\"> <\/h4>\t\t\t\t\t\t\t\t<\/div>\n\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\t<\/details>\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-1342\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"3\" tabindex=\"-1\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-1342\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> Find a clinical trial <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><i aria-hidden=\"true\" class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t<span class='e-closed'><i aria-hidden=\"true\" class=\"fas fa-plus\"><\/i><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1342\" class=\"elementor-element elementor-element-17a72d33 e-flex e-con-boxed e-con e-child\" data-id=\"17a72d33\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1342\" class=\"elementor-element elementor-element-0ea579c e-con-full e-flex e-con e-child\" data-id=\"0ea579c\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-93b8c15 elementor-widget elementor-widget-text-editor\" data-id=\"93b8c15\" data-element_type=\"widget\" data-e-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>The RQMO is a partner of<span style=\"text-decoration: underline;\"><strong>Research Trials in Quebec<\/strong><\/span> and ot its personalized support service to help patients find and participate in a clinical trial<a href=\"https:\/\/recherchecliniquequebec.com\/?fbclid=IwAR3n1Yn7OjvFnb98We9Chc2fmo2cmaWfZPUtoQtfVw02oVmnXP9RzWac7jc\" target=\"_blank\" rel=\"noopener\">Consult their website<\/a>. <\/p><p>Clinical Trial Databases:<\/p><ul><li><a href=\"https:\/\/recherchecliniquequebec.com\/registre-essais-cliniques\/\">Quebec&#8217;s Public Clinical Trials Database (recherchecliniquequebec.com)<\/a><\/li><li><a href=\"https:\/\/health-products.canada.ca\/ctdb-bdec\/?lang=fre\" target=\"_blank\" rel=\"noopener\">Looking for a clinical trial in Canada<\/a><\/li><li>Register for a clinical trial in Canada: <a href=\"https:\/\/www.viperclinicaltrials.com\/\">VIPeR<\/a><\/li><li>Clinical trials worldwide (including Canada): <a href=\"https:\/\/classic.clinicaltrials.gov\/\" target=\"_blank\" rel=\"noopener\">ClinicalTrials.gov<\/a><\/li><li><a href=\"https:\/\/euclinicaltrials.eu\/\">Clinical Trials in the European Union &#8211; EMA (euclinicaltrials.eu)<\/a><\/li><li><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/ResearchTrials_ClinicalTrials_Simple.php?lng=FR&amp;LnkId=49&amp;Typ=Pat&amp;fdp=y&amp;from=rightMenu\" target=\"_blank\" rel=\"noopener\">Orphanet: search for a clinical trial<\/a><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\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\t<\/details>\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-1343\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"4\" tabindex=\"-1\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-1343\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> Take part in research into your rare disease today <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><i aria-hidden=\"true\" class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t<span class='e-closed'><i aria-hidden=\"true\" class=\"fas fa-plus\"><\/i><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1343\" class=\"elementor-element elementor-element-1e740a93 e-con-full e-flex e-con e-child\" data-id=\"1e740a93\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6f467c5 elementor-widget elementor-widget-text-editor\" data-id=\"6f467c5\" data-element_type=\"widget\" data-e-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>You don&#8217;t have to wait for researchers to ask you to participate in a research project.<\/p><p><strong>Register yourself, your child or a loved one in a REGISTRY<\/strong><\/p><p>Some rare disease associations have taken charge of research on their disease. They themselves conduct surveys or studies and set up registries to collect data. You can register yourself in these registries from anywhere in the world. This is a way for you to advance research. The data collected is used by associations or by interested researchers. By registering, you may also be contacted in the future for academic research projects or clinical trials.<\/p><p>There are registers for:<\/p><ul><li>Des maladies sp\u00e9cifiques (un registre pour une maladie rare sp\u00e9cifique ou pour un groupe de maladies similaires)<\/li><li>Specific genes<\/li><li>All rare diseases (a registry you can join regardless of your disease)<\/li><li>And even for undiagnosed rare diseases<\/li><\/ul><p><strong>See our directory of registries below<\/strong>. If you need help paraticipating inone of these registries or can&#8217;t find one for your condition, contact us.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/details>\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-1344\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"5\" tabindex=\"-1\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-1344\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> Grants for research into rare diseases <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><i aria-hidden=\"true\" class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t<span class='e-closed'><i aria-hidden=\"true\" class=\"fas fa-plus\"><\/i><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-1344\" class=\"elementor-element elementor-element-47ff12cd e-con-full e-flex e-con e-child\" data-id=\"47ff12cd\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-381d31b elementor-widget elementor-widget-text-editor\" data-id=\"381d31b\" data-element_type=\"widget\" data-e-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<ul><li><a href=\"https:\/\/www.fondationgdpl.com\/recherche\/\" target=\"_blank\" rel=\"noopener\">Grants and scholarships from the Fondation Grand D\u00e9fi Pierre Lavoie for research into orphan hereditary diseases<\/a> <\/li><li><a style=\"color: #d66127; transition: color 200ms ease-in-out 0s, background 200ms ease-in-out 0s;\" href=\"https:\/\/coramh.org\/bourses-detudes-superieures\/\" target=\"_blank\" rel=\"noopener\">CORAMH Masters and Doctoral Scholarships for Research on Diseases in Saguenay-Lac-St-Jean<\/a><\/li><li><a style=\"color: #d66127; transition: color 200ms ease-in-out 0s, background 200ms ease-in-out 0s;\" href=\"https:\/\/rarediseasefoundation.org\/pages\/microgrant-program-application\" target=\"_blank\" rel=\"noopener\">Rare Disease Foundation Microgrant Program<\/a><\/li><li><a style=\"color: #d66127; transition: color 200ms ease-in-out 0s, background 200ms ease-in-out 0s;\" href=\"http:\/\/www.rare-diseases-catalyst-network.ca\/\" target=\"_blank\" rel=\"noopener\">Rare Diseases: Models &amp; Mechanisms Network<\/a><\/li><li><a style=\"color: #d66127; transition: color 200ms ease-in-out 0s, background 200ms ease-in-out 0s;\" href=\"https:\/\/muscle.ca\/researchers\/\" target=\"_blank\" rel=\"noopener\">Grant Offers \u2013 Muscular Dystrophy Canada<\/a><\/li><li><a href=\"https:\/\/frq.gouv.qc.ca\/\" target=\"_blank\" rel=\"noopener\">Quebec Research Fund<\/a><\/li><li><a href=\"https:\/\/cihr-irsc.gc.ca\/f\/193.html\" target=\"_blank\" rel=\"noopener\">Canadian Institutes of Health Research<\/a> <\/li><li><a href=\"https:\/\/rarediseases.org\/advancing-research\/research-grant-programs\/\">Research Grant Program | NORD (rarediseases.org)<\/a><\/li><li><a href=\"https:\/\/ncats.nih.gov\/funding\/funding-opportunities\">Funding Opportunities | National Center for Advancing Translational Sciences (nih.gov)<\/a> <\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/details>\n\t\t\t\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<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-117496b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"117496b\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-39f28ac\" data-id=\"39f28ac\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5c688210 elementor-widget elementor-widget-spacer\" data-id=\"5c688210\" data-element_type=\"widget\" data-e-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-0e0289d elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"0e0289d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-question-circle\"><\/i>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\t\t\t\t\t<h3 class=\"elementor-icon-box-title\">\n\t\t\t\t\t\t<span  >\n\t\t\t\t\t\t\tYOU WANT TO KNOW WHERE RESEARCH ON YOUR RARE DISEASE IS AT ?\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/h3>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tContact us.\nWe'll search for ongoing research projects by local and international researchers.\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\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-952b65b elementor-widget elementor-widget-spacer\" data-id=\"952b65b\" data-element_type=\"widget\" data-e-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<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Register directory OUR REGISTRY OF INTERNATIONAL REGISTRIES Register with a specific registry for your rare (or undiagnosed) disease. The RQMO has created a directory of existing rare disease registries. We have brought together in one place the rare disease registries in which patients or caregivers can register themselves or request to be registered. There are [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","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":"","ast-disable-related-posts":"","theme-transparent-header-meta":"enabled","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":"","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-10007","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/pages\/10007","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/comments?post=10007"}],"version-history":[{"count":7,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/pages\/10007\/revisions"}],"predecessor-version":[{"id":10361,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/pages\/10007\/revisions\/10361"}],"wp:attachment":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/media?parent=10007"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}