{"id":59149,"date":"2020-05-19T13:00:15","date_gmt":"2020-05-19T17:00:15","guid":{"rendered":"https:\/\/rarediseases.org\/nord-awards-eleven-new-grants-in-eight-disease-states-for-rare-disease-research\/"},"modified":"2020-05-19T13:00:15","modified_gmt":"2020-05-19T17:00:15","slug":"nord-awards-eleven-new-grants-in-eight-disease-states-for-rare-disease-research","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-awards-eleven-new-grants-in-eight-disease-states-for-rare-disease-research\/","title":{"rendered":"NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research"},"content":{"rendered":"<p><b><i>Washington, DC, May 19, <\/i><\/b><b><i>2020<\/i><\/b><i><span style=\"font-weight: 400;\">\u2014<\/span><\/i><span style=\"font-weight: 400;\">The National Organization for Rare Disorders (NORD\u00ae) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational or clinical studies related to the development of new diagnostics or treatments for rare disease. Since the program\u2019s launch in 1989, NORD grants have led to the development of two FDA-approved treatments and numerous peer-reviewed publications.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Eleven new research grants have been given to the following institutions and investigators:\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>alveolar capillary dysplasia with misalignment of the pulmonary veins (ACDMPV)<\/b><span style=\"font-weight: 400;\">, with funding from the Alveolar Capillary Dysplasia Association, The David Ashwell Foundation and William Akers, Jr. &amp; Georgia O. Akers Private Foundation, Inc.:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Frances Flanagan, MBBCh, BAO, Boston Children\u2019s Hospital (Boston, MA); Genetic Determinants of ACD\/MPV<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>appendix cancer and pseudomyxoma peritonei (PMP)<\/b><span style=\"font-weight: 400;\">, with funding from the Appendix Cancer\/Pseudomyxoma Peritonei Research Foundation:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Oliver S. Eng, MD, The University of Chicago (Chicago, IL); Assessment of the Effects of HIPEC on the Genetic Landscape of Peritoneal Metastases from High Grade Appendiceal Neoplasms<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Kjersti Flatmark, MD, PhD, Oslo University Hospital (Oslo, Norway); ctDNA for Monitoring Patients with Pseudomyxoma Peritonei<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>autoimmune polyglandular syndrome type 1 (APS-1)<\/b><span style=\"font-weight: 400;\">, with funding from the APS Type 1 Foundation:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Rachid Tazi-Ahnini, PhD, The University of Sheffield (Sheffield, UK); Developing Gene Therapy for Autoimmune Polyglandular Syndrome Type 1<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>biliary atresia<\/b><span style=\"font-weight: 400;\">, with funding from DataRevive LLC:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Michael A. Pack, MD, Perelman School of Medicine, University of Pennsylvania (Philadelphia, PA); Targeting Protein Quality Control Pathways to Treat Biliary Atresia<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Sarah A. Taylor, MD, Ann &amp; Robert H. Lurie Children\u2019s Hospital of Chicago | Northwestern University School of Medicine (Chicago, IL); Transcriptional Profiling of Hepatic Macrophages to Predict Patient Outcomes in Biliary Atresia<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>malonic aciduria<\/b><span style=\"font-weight: 400;\">, with funding from The Hope Fund:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Jiping Yue, PhD, The University of Chicago (Chicago, IL); Development of Epidermal Progenitor Cell-based Therapy for Malonic Aciduria<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>neuroendocrine cell hyperplasia of infancy (NEHI)<\/b><span style=\"font-weight: 400;\">, with funding from the NEHI Research Foundation:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Joseph Shieh, MD, PhD, University of California San Francisco (San Francisco, CA); Analysis of NEHI Susceptibility Using Informatic Technologies<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>new-onset refractory status epilepticus (NORSE) and febrile infection-related epilepsy syndrome (FIRES)<\/b><span style=\"font-weight: 400;\">, with funding from the NORSE Institute:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Ingo Helbig, MD, Children\u2019s Hospital of Philadelphia (Philadelphia, PA); Beyond Negative Exome &#8211; Understanding the Genetics of FIRES<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Claude Steriade, MD and Deepak Saxena, MD, New York University School of Medicine (New York, NY); Gut Microbiome Alterations as a Mechanism of Immune Dysregulation in New Onset Refractory Status Epilepticus<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For the study of <\/span><b>primary orthostatic tremor<\/b><span style=\"font-weight: 400;\">, with funding from public donations:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Robert Chen, MA, MB BChir, MSc, Krembil Brain Institute, University Health Network (Toronto, Canada); Modulating Dysfunctional Cerebellar Activity with Low-intensity Focused Ultrasound Stimulation for Primary Orthostatic Tremor<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">\u201c2019 was a landmark year for NORD&#8217;s Research Grants Program as we celebrated 30 years of supporting community-funded grants to advance research for rare diseases,\u201d said Vanessa Boulanger, NORD&#8217;s Director of Research. \u201cOur donors are at the heart of our program and their generous support each year drives new evidence and scientific breakthroughs that bring us closer to cures that save lives.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Grants are made possible through the generosity of partners in the rare disease community and supporters who have donated into NORD\u2019s research fund. For more information about NORD\u2019s Rare Disease Research Grant Program, funding opportunities or to donate to a research fund, visit: <\/span><a href=\"https:\/\/rarediseases.org\/research\"><span style=\"font-weight: 400;\">rarediseases.org\/research<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">#\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 #\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 #<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, DC, May 19, 2020\u2014The National Organization for Rare Disorders (NORD\u00ae) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-awards-eleven-new-grants-in-eight-disease-states-for-rare-disease-research\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"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":[1995,1615,2344,1616,2333,1069,1929,1928,2338,1483,1583,2352,2339,1934,1935,2332,2351,2347,2349,2357,1014,1452,2340,1933,2348,1932,2353,1618,1619,2345,2334,1015,2341,1927,1621,630,2336,2354,2343,1017,2346,2335,2337,2355,2350,2342,2356],"class_list":["post-59149","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","category-research","tag-acdmpv","tag-alveolar-capillary-dysplasia-with-misalignment-of-the-pulmonary-veins","tag-ann-robert-h-lurie-childrens-hospital-of-chicago","tag-appendix-cancer","tag-appendix-cancer-pseudomyxoma-peritonei-research-foundation","tag-aps-type-1-foundation","tag-aps-1","tag-autoimmune-polyglandular-syndrome-type-1","tag-biliary-atresia","tag-boston-childrens-hospital","tag-childrens-hospital-of-philadelphia","tag-claude-steriade","tag-datarevive-llc","tag-febrile-infection-related-epilepsy-syndrome","tag-fires","tag-frances-flanagan","tag-ingo-helbig","tag-jiping-yue","tag-joseph-shieh","tag-jr-georgia-o-akers-private-foundation","tag-kjersti-flatmark","tag-malonic-aciduria","tag-michael-a-pack","tag-nehi","tag-nehi-research-foundation","tag-neuroendocrine-cell-hyperplasia-of-infancy","tag-new-york-university-school-of-medicine","tag-new-onset-refractory-status-epilepticus","tag-norse","tag-northwestern-university-school-of-medicine","tag-oliver-s-eng","tag-oslo-university-hospital","tag-perelman-school-of-medicine","tag-pmp","tag-primary-orthostatic-tremor","tag-pseudomyxoma-peritonei","tag-rachid-tazi-ahnini","tag-robert-chen","tag-sarah-a-taylor","tag-the-david-ashwell-foundation","tag-the-hope-fund","tag-the-university-of-chicago","tag-the-university-of-sheffield","tag-university-health-network","tag-university-of-california-san-francisco","tag-university-of-pennsylvania","tag-william-akers"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59149","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\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59149"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59149\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59149"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59149"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59149"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}