{"id":280960,"date":"2025-09-08T08:00:41","date_gmt":"2025-09-08T12:00:41","guid":{"rendered":"https:\/\/rarediseases.org\/?p=280960"},"modified":"2025-09-08T11:21:57","modified_gmt":"2025-09-08T15:21:57","slug":"2025-seed-grants-awards","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/2025-seed-grants-awards\/","title":{"rendered":"NORD Awards 2025 Seed Grants to Advance Breakthroughs in Rare Disease Research"},"content":{"rendered":"<p style=\"text-align: center;\"><em><span class=\"TextRun SCXW205760189 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW205760189 BCX0\">Over $80,000 in Funding Supports <\/span><span class=\"NormalTextRun CommentStart SCXW205760189 BCX0\">Innova<\/span><span class=\"NormalTextRun SCXW205760189 BCX0\">tive<\/span><span class=\"NormalTextRun SCXW205760189 BCX0\"> Studies Targeting Two Critically Underserved Conditions<\/span><\/span><\/em><\/p>\n<p><span data-contrast=\"auto\">The <\/span><span data-contrast=\"none\">National Organization for Rare Disorders (NORD\u00ae)<\/span><span data-contrast=\"auto\"> has awarded more than $82,000 in seed funding to two international scientists to\u00a0 accelerate breakthroughs for rare diseases lacking effective treatments.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">NORD\u2019s seed grants aim to jumpstart scientific discovery and pave the way for larger-scale investments. These competitive awards are designed to spark novel ideas, generate critical preliminary data, and drive momentum in areas where patients often have few \u2014 if any \u2014 therapeutic options.<\/span><\/p>\n<p><strong>The 2025 recipients of NORD\u2019s seed grants are:<\/strong><\/p>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"57\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\u00b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Dr. Ilkka Paatero<\/span><\/b><span data-contrast=\"auto\">, senior researcher and head of the Zebrafish Core Facility at the University of Turku and Abo Akademi University in Turku, Finland, was awarded $40,000 to advance research on <\/span><strong><a href=\"https:\/\/rarediseases.org\/rare-diseases\/levy-yeboa-syndrome\/\">Levy-Yeboa syndrome (LYS)<\/a><\/strong><span data-contrast=\"auto\">. LYS is a rare genetic condition characterized by a combination of muscular and bone abnormalities, skin (dermatological) issues, hearing loss, and gastrointestinal distress.\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:276,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"57\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\u00b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Dr. Margherita Romeo<\/span><\/b><span data-contrast=\"auto\">, senior scientist at the Instituto di Ricerche Farmacologiche Mario Negri in Milan, Italy, was awarded $42,000 to advance research on <\/span><strong><a href=\"https:\/\/rarediseases.org\/rare-diseases\/amyloidosis\/\">amyloidosis<\/a><\/strong><span data-contrast=\"auto\">, usually a multisystem disease resulting in a wide spectrum of clinical presentations.\u00a0<\/span><\/li>\n<\/ul>\n<p><!--p style=\"text-align: center;\">[rl_gallery id=\"280965\"]<\/p-->\n<div class=\"center-img-container\" style=\"display: flex; justify-content: center; gap: 10px; margin: 20px 0;\">\n<div class=\"seed-grant-img\" style=\"height: 200px; width: 200px; background-image: url('https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/09\/NORD_MRomeo.jpeg'); background-size: cover; background-position: center center; background-repeat: no-repeat; display: flex; align-items: flex-end; justify-content: center;\">\n<div style=\"background-color: rgba(0, 0, 0, 0.7); padding: 5px; font-size: 11px; text-align: center; width: 100%; color: #fff;\">Dr. Margherita Romeo<\/div>\n<\/div>\n<div class=\"seed-grant-img\" style=\"height: 200px; width: 200px; background-image: url('https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/09\/Paatero-Ilkka-IMG_0481.jpg'); background-size: cover; background-position: center center; background-repeat: no-repeat; display: flex; align-items: flex-end; justify-content: center;\">\n<div style=\"background-color: rgba(0, 0, 0, 0.7); padding: 5px; font-size: 11px; text-align: center; width: 100%; color: #fff;\">Dr. Paatero Ilkka<\/div>\n<\/div>\n<\/div>\n<p><span data-contrast=\"auto\">\u201cCongratulations to this year\u2019s award recipients, Dr. Paatero and Dr. Romeo, whose research represents meaningful progress for the many individuals affected by Levy-Yeboa syndrome and amyloidosis,\u201d said <strong>Tracey Sikora<\/strong>, NORD Vice President of Research and Clinical Programs. \u201cWe\u2019re honored to support innovative research that addresses the vast and urgent unmet needs of those with rare diseases. We look forward to the insights and impact their work will have on advancing research for these two patient populations.\u201d\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:276,&quot;335559991&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Paatero\u2019s research project, titled <strong>\u201cZebrafish Model of Levy-Yeboa Syndrome,\u201d<\/strong> aims to generate and analyze a genetic zebrafish model for LYS. The anticipated outcomes of the study are: gaining novel insights into the disease mechanism, identification of potential drug targets, and establishing a disease model suitable for testing drugs. Ultimately, this research aims to improve understanding and treatment of Levy-Yeboa syndrome.\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Romeo\u2019s study, titled <strong>\u201cDecoding Cardiac Toxicity in AL Amyloidosis: Insights from a Novel Transgenic C. elegans Model,\u201d<\/strong> investigates how light chains cause heart damage in AL amyloidosis even before<\/span><span data-contrast=\"auto\">\u202f<\/span><span data-contrast=\"auto\">amyloid deposition occurs. This study uses <\/span><span data-contrast=\"auto\">Caenorhabditis elegans, a small nematode (roundworm) commonly used in medical research because many of its biological systems are similar to those of humans. Remarkably, the worm\u2019s pharynx functions like the human<\/span><span data-contrast=\"auto\">\u202f<\/span><span data-contrast=\"auto\">heart, allowing researchers to model cardiac damage in a simple and cost-effective way. By understanding how light chains affect this \u201cancestral heart,\u201d the study aims to uncover early molecular events of the disease and identify new targets for treatments that could protect the heart in people living with this rare and life-threatening condition.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">NORD\u2019s<strong> <a href=\"https:\/\/rarediseases.org\/advancing-research\/research-grant-programs\/\">Rare Disease Research Grant Program<\/a> <\/strong>provides funding to qualified researchers to support new or existing scientific research studies or clinical trials with the potential to attract larger funding from agencies like the National Institutes of Health (NIH), U.S. Food and Drug Administration (FDA), or corporate sponsors. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Since 1989, NORD has awarded more than $9 million in research grants to advance scientific discovery for rare diseases that lack treatment and funding. With fewer than 5% of the approximately 10,000 known rare diseases having an FDA-approved therapy, and the millions of dollars required to develop a prescriptive medication, early-stage funding plays a critical role in unlocking progress. NORD\u2019s grant program has jump-started critical rare disease research, supported numerous peer-reviewed publications, and contributed to the development of two FDA-approved treatments.\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><strong>To learn more, visit <a href=\"https:\/\/rarediseases.org\/advancing-research\/research-grant-programs\/\">rarediseases.org\/advancing-research\/research-grant-programs.<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Over $80,000 in Funding Supports Innovative Studies Targeting Two Critically Underserved Conditions The National Organization for Rare Disorders (NORD\u00ae) has awarded more than $82,000 in seed funding to two international &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/2025-seed-grants-awards\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abNORD Awards 2025 Seed Grants to Advance Breakthroughs in Rare Disease Research\u00bb<\/span><\/a><\/p>\n","protected":false},"author":13,"featured_media":0,"comment_status":"closed","ping_status":"closed","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":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190,504,193],"tags":[],"class_list":["post-280960","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","category-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280960","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=280960"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280960\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=280960"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=280960"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=280960"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}