{"id":59216,"date":"2020-11-18T14:15:48","date_gmt":"2020-11-18T19:15:48","guid":{"rendered":"https:\/\/rarediseases.org\/nord-launches-project-rdac-announces-inaugural-meeting-on-december-16\/"},"modified":"2020-11-18T14:15:48","modified_gmt":"2020-11-18T19:15:48","slug":"nord-launches-project-rdac-announces-inaugural-meeting-on-december-16","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-launches-project-rdac-announces-inaugural-meeting-on-december-16\/","title":{"rendered":"NORD Launches Project RDAC, Announces Inaugural Meeting on December 16"},"content":{"rendered":"

Washington, DC, November 18, 2020\u2014<\/span><\/b>With a mission of empowering and equipping<\/span>\u00a0the rare disease community<\/span>\u00a0to\u00a0<\/span>effectively engage decision-makers within their state governments, <\/span>t<\/span>he National Organization for Rare Disorders (NORD\u00ae)\u00a0<\/span>has\u00a0<\/span>launched<\/span>\u00a0<\/span><\/i>an initiative<\/span>\u00a0<\/span>that will<\/span>\u00a0<\/span>assist in building\u00a0<\/span>well-organized, high-functioning\u00a0<\/span>R<\/span>are<\/span>\u00a0<\/span>D<\/span>isease\u00a0<\/span>A<\/span>dvisory<\/span>\u00a0<\/span>C<\/span>ouncils<\/span>\u00a0(RDACs) in every state<\/span>\u2014<\/span>\u201c<\/span>Project RDAC<\/span><\/i>.<\/span><\/i>\u201d<\/span><\/i>\u00a0<\/span>The inaugural\u00a0<\/span>public\u00a0<\/span>meeting<\/span>\u00a0<\/span>in support<\/span>\u00a0<\/span>of<\/span>\u00a0<\/span>Project RDAC<\/span><\/i>\u00a0will\u00a0<\/span>be held<\/span>\u00a0<\/span>virtually\u00a0<\/span>on December 16<\/span>.<\/span>\u00a0<\/span><\/p>\n

First established\u00a0<\/span>by North Carolina<\/span>\u00a0<\/span>rare\u00a0<\/span>disease\u00a0<\/span>patients<\/span>, families and\u00a0<\/span>health care\u00a0<\/span>providers in<\/span>\u00a02015<\/span>,\u00a0<\/span>an<\/span>\u00a0RDAC<\/span>\u00a0<\/span>provide<\/span>s<\/span>\u00a0stakeholders\u00a0<\/span>with\u00a0<\/span>a<\/span>\u00a0forum<\/span>\u00a0to make recommendations to state leaders on\u00a0<\/span>matters<\/span>\u00a0of importance to the rare disease community,<\/span>\u00a0including the need for increased<\/span>\u00a0<\/span>awareness,\u00a0<\/span>access to\u00a0<\/span>diagnostic tools<\/span>,<\/span>\u00a0and affordable treatments and<\/span>\u00a0<\/span>cures.<\/span>\u00a0<\/span>Through<\/span>\u00a0strong\u00a0<\/span>RDACs<\/span>,\u00a0<\/span>the rare<\/span>\u00a0disease<\/span>\u00a0community and\u00a0<\/span>government officials can partner to develop the resources necessary to\u00a0<\/span>strategically\u00a0<\/span>address barriers<\/span>,<\/span>\u00a0allow<\/span>ing<\/span>\u00a0states and their citizens to thrive.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201c<\/span>RDACs<\/span>\u00a0<\/span>have outstanding potential for<\/span>\u00a0addressing\u00a0<\/span>obstacle<\/span>s that prevent individuals living with rare diseases from obtaining proper treatment and care for their conditions<\/span>,\u201d said Rachel Sher, Vice President, Policy and Regulatory Affairs for NORD<\/span>.\u00a0<\/span>\u201c<\/span>S<\/span>ince<\/span>\u00a02019<\/span>, eight governors have signed RDAC legislation into law<\/span>,<\/span>\u00a0bringing the total number of RDAC<\/span>s<\/span>\u00a0established by states to 14,<\/span>\u00a0and momentum is\u00a0<\/span>continuing to grow<\/span>,<\/span>\u201d<\/span>\u00a0<\/span>Sher said.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Project RDAC<\/span><\/i>\u00a0will\u00a0<\/span>off<\/span>e<\/span>r<\/span>\u00a0opportunities for\u00a0<\/span>existing RDAC\u00a0<\/span>members<\/span>\u00a0to\u00a0<\/span>connect and\u00a0<\/span>collaborate on a regular basis,\u00a0<\/span>provide\u00a0<\/span>educational resources to guide RDACs at every step of their journey, and help additional states pass legislation to create high-functioning RDACs<\/span>.<\/span>\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

On December 16,\u00a0<\/span>NORD\u00a0<\/span>will\u00a0<\/span>virtually\u00a0<\/span>convene<\/span>\u00a0a meeting of<\/span>\u00a0<\/span>the<\/span>\u00a0<\/span>rare disease community<\/span>,<\/span>\u00a0members of existing\u00a0<\/span>RDACs<\/span>,<\/span>\u00a0and\u00a0<\/span>advocates\u00a0<\/span>from<\/span>\u00a0states actively pursuing legislation to enact\u00a0<\/span>an<\/span>\u00a0RDAC<\/span>.<\/span>\u00a0<\/span>This<\/span>\u00a0<\/span>event will f<\/span>eature<\/span>\u00a0<\/span>an<\/span>\u00a0<\/span>\u201cEarly Successes and Challenges of\u00a0<\/span>RDACs<\/span>\u201d\u00a0<\/span>panel<\/span>,\u00a0<\/span>breakout sessions\u00a0<\/span>for<\/span>\u00a0networking<\/span>,<\/span>\u00a0<\/span>and<\/span>\u00a0<\/span>information<\/span>\u00a0that can guide future efforts to introduce and\u00a0<\/span>enact<\/span>\u00a0RDAC legislation into law across the country.<\/span>\u00a0<\/span>To register for the meeting, click\u00a0<\/span>here<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n

For more information <\/span>on\u00a0<\/span>Project RDAC<\/span><\/i>\u00a0and how to get involve<\/span>d\u00a0<\/span>with a Rare Disease Advisory Council in your state, visit the <\/span>https:\/\/rarediseases.org\/rdac-overview\/<\/span><\/a>\u00a0<\/span>or email\u00a0<\/span>policy@rarediseases.org<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Washington, DC, November 18, 2020\u2014With a mission of empowering and equipping\u00a0the rare disease community\u00a0to\u00a0effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD\u00ae)\u00a0has\u00a0launched\u00a0an initiative\u00a0that will\u00a0assist in … <\/p>\n

Continue reading “NORD Launches Project RDAC, Announces Inaugural Meeting on December 16”<\/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":[232,190,504,2572],"tags":[2210,2575,1840,1270,2573,2574],"class_list":["post-59216","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","category-press-releases","category-rdacs","tag-horizon-therapeutics","tag-policy-and-regulatory-affairs-for-nord","tag-rachel-sher","tag-rare-disease-advisory-council","tag-rdac","tag-vice-president"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59216","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=59216"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59216\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59216"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59216"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59216"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}