{"id":59356,"date":"2021-12-15T12:56:44","date_gmt":"2021-12-15T17:56:44","guid":{"rendered":"https:\/\/rarediseases.org\/celebrating-advocacy-action-and-a-year-of-success-building-rare-disease-advisory-councils\/"},"modified":"2021-12-15T12:56:44","modified_gmt":"2021-12-15T17:56:44","slug":"celebrating-advocacy-action-and-a-year-of-success-building-rare-disease-advisory-councils","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/celebrating-advocacy-action-and-a-year-of-success-building-rare-disease-advisory-councils\/","title":{"rendered":"Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils"},"content":{"rendered":"<h3><em>Seven Rare Disease Advisory Councils Established Since Launch of NORD\u2019s Project RDAC<\/em><\/h3>\n<p><strong>Washington, DC &#8211; December 15, 2021<\/strong> \u2013 In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare disease, is celebrating the growth and success of rare disease advisory councils throughout the country.<\/p>\n<p>A Rare Disease Advisory Council (RDAC) provides a platform to strengthen the voice of the rare disease community in state government. Through Project RDAC, an initiative officially launched in late 2020, NORD is working to optimize existing RDACs and increase the number of states with Councils to ensure the needs of the rare disease community are being met.<\/p>\n<p>\u201cThe first year of Project RDAC directly led to the creation of seven new RDACs across the country, which is an impressive reflection of the strength of the rare disease community and the interest and engagement of volunteers, state decisionmakers, patients and families. NORD is so proud of the new RDACs established, and greatly looks forward to doing more policy engagement and coalition building next year,\u201d said <strong>Peter Saltonstall, CEO and President, NORD<\/strong>.<\/p>\n<p>Project RDAC\u2019s state action and impact to date includes:<\/p>\n<ul>\n<li>57 RDAC coalition meetings<\/li>\n<li>201 patient organizations engaged<\/li>\n<li>254 legislators contacted with action alerts<\/li>\n<li>114 testimonies and letters of support submitted<\/li>\n<li>11 RDAC bills introduced<\/li>\n<li>7 new RDACs signed into law in 2021<\/li>\n<\/ul>\n<p>The seven states to pass RDACs in 2021 are Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina, and Virginia.<\/p>\n<p>For more information on RDACs, NORD\u2019s work with state governments throughout the country, and ways to get involved, visit <a href=\"https:\/\/rarediseases.org\/projectrdac\/\">the Project RDAC website<\/a>.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong><em>About the National Organization for Rare Disorders (NORD)<\/em><\/strong><\/span><\/p>\n<p><em>The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases\u00a0in\u00a0the United States. 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. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical\u00a0research,\u00a0and providing patient and family services for those who need them most.\u00a0Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit\u00a0<\/em><a href=\"https:\/\/rarediseases.org\/\"><em>rarediseases.org<\/em><\/a><em>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Seven Rare Disease Advisory Councils Established Since Launch of NORD\u2019s Project RDAC Washington, DC &#8211; December 15, 2021 \u2013 In 2015, the first rare disease advisory council was created in &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/celebrating-advocacy-action-and-a-year-of-success-building-rare-disease-advisory-councils\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils&#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":[232,504,2572],"tags":[2888,2889,2890,2887,225,2891,360,315,1270,2573,2892,1129],"class_list":["post-59356","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-press-releases","category-rdacs","tag-florida","tag-louisiana","tag-massachusetts","tag-new-jersey","tag-nord","tag-ohio","tag-peter-saltonstall","tag-rare-disease","tag-rare-disease-advisory-council","tag-rdac","tag-south-carolina","tag-virginia"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59356","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=59356"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59356\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59356"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59356"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59356"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}