{"id":9285,"date":"2022-08-07T21:39:38","date_gmt":"2022-08-07T21:39:38","guid":{"rendered":"https:\/\/www.itsan.org\/us\/?p=9285"},"modified":"2025-08-14T14:22:40","modified_gmt":"2025-08-14T14:22:40","slug":"press-release-from-the-international-topical-steroid-awareness-network","status":"publish","type":"post","link":"https:\/\/www.itsan.org\/us\/2022\/08\/07\/press-release-from-the-international-topical-steroid-awareness-network\/","title":{"rendered":"PRESS RELEASE &#8211; from the International Topical Steroid Awareness Network"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-kqzx0l-d6caba5bf6163b490d4c8fdaadc8ee64\">\n.flex_column.av-kqzx0l-d6caba5bf6163b490d4c8fdaadc8ee64{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-kqzx0l-d6caba5bf6163b490d4c8fdaadc8ee64 av_one_full  avia-builder-el-0  el_before_av_three_fourth  avia-builder-el-first  first flex_column_div av-zero-column-padding  '     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-j5t0n9-63f97b346a2379c43bce2b842179ccd8\">\n#top .av_textblock_section.av-j5t0n9-63f97b346a2379c43bce2b842179ccd8 .avia_textblock{\nfont-size:10px;\n}\n<\/style>\n<section  class='av_textblock_section av-j5t0n9-63f97b346a2379c43bce2b842179ccd8 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><h3>PRESS RELEASE &#8211; from the International Topical Steroid Awareness Network<\/h3>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-hg55it-301959801867dccf2dc289fa19318f39\">\n.flex_column.av-hg55it-301959801867dccf2dc289fa19318f39{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-hg55it-301959801867dccf2dc289fa19318f39 av_three_fourth  avia-builder-el-2  el_after_av_one_full  el_before_av_one_fourth  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-gd1m85-c68bfb6b44f11230818e57d93d3a022f '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>ITSAN Partners with NORD\u00ae to Initiate the\u00a0Topical Steroid Withdrawal Syndrome Patient Registry.\u00a0<em>A natural history study is planned for participants worldwide to advance\u00a0understanding and impact of TSW Syndrome. <\/em><\/strong><\/p>\n<p>Dacula, GA, August 11, 2022\u00a0\u2014 <span style=\"font-weight: 400;\">The International Topical Steroid Awareness Network<\/span><span style=\"font-weight: 400;\"> (ITSAN) has partnered with the National Organization for Rare Disorders (NORD)<\/span> to plan and build a registry to research Topical Steroid Withdrawal (TSW) Syndrome. TSW\u00a0Syndrome is a debilitating condition that can arise from the use of topical steroids\u00a0to treat a skin condition such as eczema. Many sufferers are bedridden and housebound for months to\u00a0years before symptoms abate.<\/p>\n<p>This study, designed by researchers, medical experts and patients, will provide the opportunity for\u00a0patients and caregivers around the world to share information about their experience with TSW\u00a0Syndrome. The information in this registry will be used to establish prevalence, advance research and\u00a0improve care. TSW Syndrome is an iatrogenic condition, which means it is a condition caused\u00a0inadvertently by a medical treatment. Not everyone who uses topical steroids will develop TSW\u00a0Syndrome. It is unclear why some individuals experience TSW Syndrome secondary to topical\u00a0steroid therapy and why others do not.<\/p>\n<p>&#8220;The TSW Syndrome Patient Registry aims to address how we can prevent Topical Steroid Withdrawal\u00a0Syndrome, an often unrecognized and misdiagnosed condition,\u201d said Kathryn Tullos, ITSAN President.\u00a0\u201cFollowing TSW Syndrome patients within a longitudinal patient registry will provide historical data on\u00a0their exposure to topical steroids, symptoms they experienced, the treatments they are prescribed, their\u00a0experience with the medical community, and their quality of life over time.\u201d<\/p>\n<p>This natural history study will be hosted on NORD\u2019s IAMRARE\u00ae online platform, which is designed to\u00a0track the course of TSW Syndrome over time in a set of electronic surveys. Patients, caregivers or\u00a0guardians will enter information from anywhere in the world. The data is confidential and stored securely\u00a0on the platform.\u00a0One goal of ITSAN is to share the collected data with researchers or institutions\u00a0conducting research on TSW Syndrome.<\/p>\n<p>ITSAN is launching this study in collaboration with NORD, an independent nonprofit that built its natural\u00a0history study platform as part of its mission to help identify and treat all 7,000 rare diseases. ITSAN is a\u00a0member of NORD, and these two organizations will work together to understand the challenges and\u00a0identify opportunities to advance research for the TSW patient population.<\/p>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-e16po5-909b325dc518cecf64bc835dd0e17c3b\">\n.flex_column.av-e16po5-909b325dc518cecf64bc835dd0e17c3b{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-e16po5-909b325dc518cecf64bc835dd0e17c3b av_one_fourth  avia-builder-el-4  el_after_av_three_fourth  el_before_av_hr  flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-c3fcpx-eb0f08306dd6af761c1d9aa9e53a3ebd '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9292 \" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM-300x110.png\" alt=\"\" width=\"330\" height=\"121\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM-300x110.png 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM-768x281.png 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM-705x258.png 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM-450x165.png 450w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/08\/Screen-Shot-2022-08-07-at-5.35.07-PM.png 918w\" sizes=\"auto, (max-width: 330px) 100vw, 330px\" \/><\/p>\n<\/div><\/section><\/div>\n<div  class='hr av-aei2dx-f152a4eccd5166ebe92c6f1ee0d4fd8f hr-default  avia-builder-el-6  el_after_av_one_fourth  el_before_av_three_fourth '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-92ylqd-1fd855e3080aea55be3b73bbc2f2f839\">\n.flex_column.av-92ylqd-1fd855e3080aea55be3b73bbc2f2f839{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-92ylqd-1fd855e3080aea55be3b73bbc2f2f839 av_three_fourth  avia-builder-el-7  el_after_av_hr  el_before_av_hr  first flex_column_div av-zero-column-padding  '     ><section  class='av_textblock_section av-7jcxjp-753234a4b2280d32cc0e521b04c73702 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>About The International Topical Steroid Awareness Network (ITSAN)<\/strong><\/p>\n<p><em>ITSAN is the only 501(c)(3) non-profit charity serving the global TSW Syndrome community as a resource\u00a0for the individual, the caregiver, and the healthcare provider. ITSAN has grown into a thriving worldwide\u00a0online community where members comfort, share, and support one another. ITSAN supports the TSW\u00a0community with resources and information provided on the website (ITSAN.org), through social media\u00a0channels and newsletter updates, and through direct communication with TSW sufferers.\u00a0Resources also\u00a0include scientific papers, educational pamphlets for doctors, and video podcasts to advocate for the\u00a0community. ITSAN has a private online support group which has grown to 14,000 members. ITSAN<\/em>\u00a0<em>hosts global virtual meetups and conferences. ITSAN participates in numerous national and international\u00a0coalitions and advocacy initiatives to advance the mission to raise awareness of Topical Steroid\u00a0Withdrawal Syndrome and support affected individuals. For more information visit\u00a0<a href=\"https:\/\/www.itsan.org\/us\/\"><span style=\"font-weight: 400;\">ITSAN.org<\/span><\/a><\/em><\/p>\n<p>ITSAN Media Contact:<br \/>\nMichelle Li, <span style=\"font-weight: 400;\">mli@itsan.org<\/span>, ITSAN<\/p>\n<\/div><\/section><\/div><div  class='hr av-5q5jdh-74add6a1df2c32e23ff90c5426b12349 hr-default  avia-builder-el-9  el_after_av_three_fourth  el_before_av_three_fourth '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div><\/p>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-4l69t1-69d1f6b81f68d97713aafe11bb680dcc\">\n.flex_column.av-4l69t1-69d1f6b81f68d97713aafe11bb680dcc{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-4l69t1-69d1f6b81f68d97713aafe11bb680dcc av_three_fourth  avia-builder-el-10  el_after_av_hr  avia-builder-el-last  first flex_column_div av-zero-column-padding  '     ><section  class='av_textblock_section av-2i7l11-77c57ade7c930e3124df1f909935f45f '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>About National Organization for Rare Disorders, Inc. (NORD\u00ae \u00ae)\u00a0<\/strong><\/p>\n<p><em>The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization\u00a0representing all patients and families affected by rare diseases\u202fin\u202fthe United States. NORD began as a\u00a0small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan\u00a0Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease\u00a0community, driving supportive policies, furthering education, advancing medical\u202fresearch,\u202fand providing\u00a0patient and family services for those who need them most.\u202fTogether with over 300 disease-specific\u00a0member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and<\/em>\u00a0<em>national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare\u00a0diseases. Visit\u202f<a href=\"https:\/\/rarediseases.org\/\"><span style=\"font-weight: 400;\">rarediseases.org<\/span><\/a><\/em><\/p>\n<p>NORD Media Contact:<br \/>\nRohan Narayanan, rnarayanan@rarediseases.org, NORD<\/p>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":7,"featured_media":9397,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[25],"tags":[],"class_list":["post-9285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/9285","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/comments?post=9285"}],"version-history":[{"count":12,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/9285\/revisions"}],"predecessor-version":[{"id":9549,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/9285\/revisions\/9549"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media\/9397"}],"wp:attachment":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media?parent=9285"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/categories?post=9285"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/tags?post=9285"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}