{"id":2333,"date":"2019-02-20T00:00:00","date_gmt":"2019-02-20T05:00:00","guid":{"rendered":"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/"},"modified":"2019-07-30T17:22:13","modified_gmt":"2019-07-30T21:22:13","slug":"february-28-is-rare-disease-day","status":"publish","type":"post","link":"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/","title":{"rendered":"February 28 is Rare Disease Day"},"content":{"rendered":"<p><a href=\"https:\/\/www.med.unc.edu\/childrensresearch\/wp-content\/uploads\/sites\/967\/2019\/02\/rdd-logo-small.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-full wp-image-3805\" src=\"https:\/\/www.med.unc.edu\/childrensresearch\/wp-content\/uploads\/sites\/967\/2019\/02\/rdd-logo-small.jpg\" alt=\"\" width=\"150\" height=\"143\" \/><\/a>Rare Disease Day is an international movement that started over 10 years ago as a way to increase awareness of the 7,000 rare diseases (those affecting \u2264 1 in 1,000 people) amongst the general public as well as policy-makers. Taken together, it is estimated that 25-30 million (or about 1 in 10) Americans have a rare disease. The majority of these diseases are inherited or caused by genetic mutations; and the majority of people that are affected are children.<\/p>\n<p>It is important to raise awareness of the impact these conditions have of the lives of people and families. Investigating new treatments for these diseases is difficult for the pharmaceutical industry because each condition only affects a small number of patients and the financial investment involved in developing new drugs makes research and development too risky and cost-prohibitive. However, research on rare diseases is often applicable to and advances our understanding of more common diseases like asthma, heart disease, and diabetes.<\/p>\n<p>There are many researchers and groups across campus that work on rare diseases affecting children. These programs include the <a href=\"http:\/\/www.cidd.unc.edu\/\" target=\"_blank\" rel=\"noopener noreferrer\">Carolina Institute for Developmental Disabilities<\/a>, the <a href=\"https:\/\/www.med.unc.edu\/marsicolunginstitute\/\" target=\"_blank\" rel=\"noopener noreferrer\">Marsico Lung Institute<\/a>, the <a href=\"https:\/\/www.med.unc.edu\/genetherapy\/\" target=\"_blank\" rel=\"noopener noreferrer\">Gene Therapy Center<\/a>, the <a href=\"https:\/\/unclineberger.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Lineberger Comprehensive Cancer Center<\/a>, and the various programs within the <a href=\"https:\/\/www.med.unc.edu\/pediatrics\/hematology-oncology\/\" target=\"_blank\" rel=\"noopener noreferrer\">Division of Pediatric Hematology-Oncology<\/a>, to name a few.<\/p>\n<p>Locally, the <a href=\"https:\/\/pharmacy.unc.edu\/research\/unc-catalyst-rare-diseases\/\" target=\"_blank\" rel=\"noopener noreferrer\">UNC Catalyst For Rare Diseases<\/a> within the Eshelman School of Pharmacy is hosting an event on <strong>Thursday February 27<sup>th<\/sup> from 11am-1pm<\/strong> in the Genetic Medicine Building where their researchers will review their projects and the Catalyst program\u2019s overall mission. Additionally, representatives from the NC State Legislature, NC Rare Disease Advisory Council, UNC, the National Organizational for Rare Disorders (NORD), patient advocacy groups, and biotech companies will be attending a <a href=\"https:\/\/www.ncbiotech.org\/events\/syneos-health-rare-disease-day-symposium\" target=\"_blank\" rel=\"noopener noreferrer\">Rare Disease Day Symposium<\/a>\u00a0in Morrisville, sponsored by Syneos Health, giving presentations, and leading discussions regarding the current and future state of research.<\/p>\n<p>The CRI would like to express our appreciation to all of the rare disease researchers across campus and invite everyone to participate in Rare Disease Day. To hear stories from patients, learn more about the impact and work being done on rare diseases, or to get involved in education, activism, view local events, or fundraising for rare disease research, please visit the <a href=\"https:\/\/rarediseases.org\/rare-disease-day\/about-the-day\/\" target=\"_blank\" rel=\"noopener noreferrer\">NORD website<\/a>.<\/p>\n<p>If you would like to make a gift to support research fighting childhood illness, please visit our\u00a0<a class=\"external-link\" title=\"\" href=\"https:\/\/childrensresearch.unc.edu\/support\/\" target=\"_blank\" rel=\"noopener noreferrer\">support page<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rare Disease Day is an international movement that started over 10 years ago as a way to increase awareness of the 7,000 rare diseases (those affecting \u2264 1 in 1,000 people) amongst the general public as well as policy-makers. Taken together, it is estimated that 25-30 million (or about 1 in 10) Americans have a &hellip; <a href=\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\" aria-label=\"Read more about February 28 is Rare Disease Day\">Read more<\/a><\/p>\n","protected":false},"author":79819,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[3],"tags":[],"class_list":["post-2333","post","type-post","status-publish","format-standard","hentry","category-news","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>February 28 is Rare Disease Day - UNC Children&#039;s Research Institute<\/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:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"February 28 is Rare Disease Day - UNC Children&#039;s Research Institute\" \/>\n<meta property=\"og:description\" content=\"Rare Disease Day is an international movement that started over 10 years ago as a way to increase awareness of the 7,000 rare diseases (those affecting \u2264 1 in 1,000 people) amongst the general public as well as policy-makers. Taken together, it is estimated that 25-30 million (or about 1 in 10) Americans have a &hellip; Read more\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\" \/>\n<meta property=\"og:site_name\" content=\"UNC Children&#039;s Research Institute\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/uncchildrensresearch\" \/>\n<meta property=\"article:published_time\" content=\"2019-02-20T05:00:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2019-07-30T21:22:13+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.med.unc.edu\/childrensresearch\/wp-content\/uploads\/sites\/967\/2019\/02\/rdd-logo-small.jpg\" \/>\n<meta name=\"author\" content=\"Kate Matthews\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Kate Matthews\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\"},\"author\":{\"name\":\"Kate Matthews\",\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/#\/schema\/person\/f9ceb074a239eb5c2b5984124745f9e8\"},\"headline\":\"February 28 is Rare Disease Day\",\"datePublished\":\"2019-02-20T05:00:00+00:00\",\"dateModified\":\"2019-07-30T21:22:13+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\"},\"wordCount\":388,\"publisher\":{\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.med.unc.edu\/childrensresearch\/wp-content\/uploads\/sites\/967\/2019\/02\/rdd-logo-small.jpg\",\"articleSection\":[\"News\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\",\"url\":\"https:\/\/www.med.unc.edu\/childrensresearch\/2019\/02\/february-28-is-rare-disease-day\/\",\"name\":\"February 28 is Rare Disease Day - 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