{"id":30256,"date":"2025-02-19T11:00:00","date_gmt":"2025-02-19T16:00:00","guid":{"rendered":"https:\/\/genomequebec.com\/?p=30256"},"modified":"2025-05-22T16:27:54","modified_gmt":"2025-05-22T20:27:54","slug":"genome-quebec-invests-over-750000-to-support-the-rare-qc-networks-activities","status":"publish","type":"post","link":"https:\/\/genomequebec.com\/en\/news-and-publications\/genome-quebec-invests-over-750000-to-support-the-rare-qc-networks-activities\/","title":{"rendered":"G\u00e9nome Qu\u00e9bec invests over $750,000 to support the RARE.Qc network&#8217;s activities"},"content":{"rendered":"\n<p>The network to advance research on rare diseases in Qu\u00e9bec (<strong>RARE.Qc<\/strong>) is a Qu\u00e9bec network funded by the Fonds de recherche du Qu\u00e9bec &#8211; Sant\u00e9 (<strong>FRQS<\/strong>) and directed by Dr. Don Vinh of the Research Institute of the McGill University Health Centre (<strong>RI-MUHC<\/strong>). The network is dedicated to advancing research and innovation in the field of rare diseases by fostering collaboration between researchers, health professionals, institutions and government agencies. Its aim is to accelerate the development of treatments and improve understanding of these diseases through a platform for sharing knowledge, data and resources.<\/p>\n\n\n\n<p><strong>A strategic partnership to advance research<\/strong><\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>&#8220;This investment marks a key step in improving the data infrastructure for rare diseases. By collaborating with RARE.Qc, we are strengthening research capabilities and paving the way for significant advances for Qu\u00e9bec patients.&#8221;<\/p>\n\n\n\n<p><strong>\u2014 St\u00e9phanie Lord-Fontaine, Vice-President, Scientific Affairs, G\u00e9nome Qu\u00e9bec<\/strong><\/p>\n<\/blockquote>\n\n\n\n<p><strong>A strong commitment from G\u00e9nome Qu\u00e9bec<\/strong><\/p>\n\n\n\n<p>Rare diseases are a strategic priority for G\u00e9nome Qu\u00e9bec. In partnership with the <strong>CHU Sainte-Justine<\/strong>, G\u00e9nome Qu\u00e9bec supports the Qu\u00e9bec Genomic Data Centre (<strong>CQDG<\/strong>), a platform that harmonizes and disseminates genomic data from clinical and research studies in Quebec. The CQDG is working in collaboration with the Minist\u00e8re de la Sant\u00e9 et des Services sociaux and the R\u00e9seau qu\u00e9b\u00e9cois de diagnostic mol\u00e9culaire to develop the IT infrastructure needed to host data from clinical sequencing.<\/p>\n\n\n\n<p><strong>Investment to strengthen data infrastructure for rare diseases<\/strong><\/p>\n\n\n\n<p>G\u00e9nome Qu\u00e9bec&#8217;s investment will support the work of Vincent Ferretti, professor at the CHU Sainte-Justine Research Centre, to tailor\/adapt the CQDG platform to the needs of RARE.Qc. This support will be used more specifically to:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Ensure the secure hosting and sharing of genomic and clinical data of individuals living with a rare disease.<\/li>\n\n\n\n<li>Develop new functionalities for data analysis and exploration of biobanks.<\/li>\n\n\n\n<li>Set up a patient portal to facilitate the recruitment and consent of individuals living with rare diseases for clinical studies.<\/li>\n<\/ul>\n\n\n\n<p>This partnership between G\u00e9nome Qu\u00e9bec, RARE.Qc and the FRQS is a major step to accelerate research into rare diseases. It establishes a world-class data infrastructure that will contribute to the development of more effective treatments and diagnostic tools.<\/p>\n\n\n\n<p>To find out more about genomic initiatives for rare diseases: <a href=\"https:\/\/genomequebec.com\/en\/genomics\/societal-challenges\/rare-diseases\/\">Rare Diseases | G\u00e9nomeQu\u00e9bec inc.<\/a><\/p>\n\n\n\n<p><strong>For more information about this announcement, we invite you to watch the concerned &#8220;Zebinar&#8221;!: <\/strong><\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Le r\u00e9seau pour avancer la recherche en maladies rares au Qu\u00e9bec : 1 an plus tard!\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/ZENKAiKcHWk?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>The network to advance research on rare diseases in Qu\u00e9bec (RARE.Qc) is a Qu\u00e9bec network funded by the Fonds de recherche du Qu\u00e9bec &#8211; Sant\u00e9 (FRQS) and directed by Dr.&hellip;<\/p>\n","protected":false},"author":2,"featured_media":30273,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"16833,16560,29809,16632,16758,16588","_relevanssi_noindex_reason":"","footnotes":""},"categories":[295,586],"tags":[],"class_list":["post-30256","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-actualite-2-en"],"acf":[],"_links":{"self":[{"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/posts\/30256","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/comments?post=30256"}],"version-history":[{"count":8,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/posts\/30256\/revisions"}],"predecessor-version":[{"id":31399,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/posts\/30256\/revisions\/31399"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/media\/30273"}],"wp:attachment":[{"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/media?parent=30256"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/categories?post=30256"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/genomequebec.com\/en\/wp-json\/wp\/v2\/tags?post=30256"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}