{"id":58945,"date":"2018-07-19T14:17:28","date_gmt":"2018-07-19T18:17:28","guid":{"rendered":"https:\/\/rarediseases.org\/nords-rareedu-launches-video-addressing-a-topic-vital-to-todays-rare-disease-community-gene-therapy-your-questions-answered\/"},"modified":"2018-07-19T14:17:28","modified_gmt":"2018-07-19T18:17:28","slug":"nords-rareedu-launches-video-addressing-a-topic-vital-to-todays-rare-disease-community-gene-therapy-your-questions-answered","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nords-rareedu-launches-video-addressing-a-topic-vital-to-todays-rare-disease-community-gene-therapy-your-questions-answered\/","title":{"rendered":"NORD\u2019s RareEDU\u00ae Launches Video Addressing a Topic Vital to Today\u2019s Rare Disease Community, Gene Therapy: Your Questions Answered"},"content":{"rendered":"<p><span style=\"font-weight: 400;\"><strong>Washington, D.C., July 19, 2018\u2014<\/strong>The National Organization for Rare Disorders\u00ae (NORD\u00ae) today launched <\/span><i><span style=\"font-weight: 400;\">Gene Therapy: Your Questions Answered<\/span><\/i><span style=\"font-weight: 400;\">, a new video from its RareEDU\u00ae educational program addressing some of the most commonly asked questions from patients and caregivers on the topic<\/span><span style=\"font-weight: 400;\">. <\/span><span style=\"font-weight: 400;\">\u00a0It is available for viewing <a href=\"https:\/\/www.youtube.com\/watch?v=5ChXI6cSQs0&amp;feature=youtu.be\" target=\"_blank\" rel=\"noopener nofollow\">here<\/a>.\u00a0<\/span><\/p>\n<p style=\"text-align: center;\"><iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/5ChXI6cSQs0?rel=0\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><span style=\"font-weight: 400;\">\u201cFor 35 years, providing information and education to the rare disease community has been an integral part of our mission at NORD. Through RareEDU\u00ae, we provide educational resources for patients and caregivers, medical professionals, students preparing for health-related careers and the public,\u201d said Mary Dunkle, Vice President of Educational Initiatives for NORD. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cIn light of the first therapies approved by FDA recently, gene therapy is a topic very much at the forefront of rare disease conversations. We are pleased to be presenting a video that patients, caregivers and the general public should find useful,\u201d Dunkle added. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">The goal of this video is to address the questions, hopes and concerns that patients and caregivers, across many different diseases, have about gene therapy. Since more than 80% of rare diseases are believed to be genetic, this video will serve as a helpful resource for the rare disease community.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Gathering input for the video was an interdepartmental effort earlier in 2018, with NORD&#8217;s membership team querying member organizations and the communications team requesting input from NORD&#8217;s social media followers. Though the responses received were <\/span><span style=\"font-weight: 400;\">from across the spectrum of rare diseases, the most frequently asked questions tended to be the same.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The responses were pared down to 11 of the most frequently asked questions. NORD then \u00a0engaged with a social worker, Emma Crowley, and a medical expert, Dr. Cristina Liberati at the gene therapy center at the University of Florida medical school, to craft accurate answers to those questions. Marsha Lanes, a genetic counselor on the NORD staff, helped ensure that the responses were written in patient-friendly language and that video images were appropriate. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">The video was made possible by a donation from Spark Therapeutics. NORD is solely responsible for the content. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Questions covered in <\/span><i><span style=\"font-weight: 400;\">Gene Therapy: Your Questions Answered<\/span><\/i><span style=\"font-weight: 400;\"> include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Is gene therapy a cure?<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Why is gene therapy getting so much attention?<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Why does it cost so much?<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Will insurance pay for it?<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">What is the difference between gene therapy and gene editing?<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">NORD will be developing other educational videos over the next several months on topics of interest to rare disease patients and caregivers. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">About 7,000 rare diseases have been identified, affecting 25 to 30 million Americans. Of the 7,000 that exist, fewer than 500 rare diseases have FDA-approved treatments.<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">###<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><b>About the National Organization for Rare Disorders\u00ae (NORD\u00ae)<\/b><\/p>\n<p><span style=\"font-weight: 400;\">The National Organization for Rare Disorders\u00ae (NORD\u00ae)<\/span><span style=\"font-weight: 400;\">\u00a0is the leading independent advocacy organization representing all patients and families affected by rare diseases.\u00a0 NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.\u00a0 NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.\u00a0 NORD represents more than 270 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><strong>Media Contact:<\/strong><br \/>\n<\/span><span style=\"font-weight: 400;\">Laura Mullen<br \/>\n<\/span><a href=\"mailto:lmullen@rarediseases.org\"><span style=\"font-weight: 400;\">lmullen@rarediseases.org<\/span><br \/>\n<\/a><span style=\"font-weight: 400;\">(203) 304-7258<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Watch the latest release from NORD&#8217;s RareEDU\u2122 on gene therapy.<\/p>\n","protected":false},"author":1,"featured_media":12559,"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":[190,210,191,192,504,193],"tags":[212,225,266,1687],"class_list":["post-58945","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","category-industry","category-medical","category-patients-members","category-press-releases","category-research","tag-gene-therapy","tag-nord","tag-rare-disease-research","tag-rareedu"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58945","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=58945"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58945\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12559"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58945"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58945"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58945"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}