{"id":58675,"date":"2015-12-17T15:15:14","date_gmt":"2015-12-17T20:15:14","guid":{"rendered":"https:\/\/rarediseases.org\/get-involved-in-your-state-on-rare-disease-day\/"},"modified":"2022-12-01T11:56:58","modified_gmt":"2022-12-01T16:56:58","slug":"get-involved-in-your-state-on-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/get-involved-in-your-state-on-rare-disease-day\/","title":{"rendered":"Get Involved in Your State on Rare Disease Day"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p>On February 29, millions of people worldwide will come together to raise\u00a0awareness about rare diseases and their impact on patients&#8217; lives. This is our\u00a0day to be heard, so speak up and tell your elected officials about what it is like\u00a0to live rare. Here are some ideas to get started&#8230;<\/p>\n<p><strong><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/capitol-building-logo-design-concept-36879595.jpg\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-23086 alignleft\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/capitol-building-logo-design-concept-36879595-150x150.jpg\" alt=\"capitol-building-logo-design-concept-36879595\" width=\"83\" height=\"83\" \/><\/a>State House Events<\/strong><\/p>\n<p>State House Events are\u00a0happening in 30 states (and\u00a0counting). <a href=\"mailto:kangell@rarediseases.org\" target=\"_blank\" rel=\"noopener\">Contact us<\/a>\u00a0and learn\u00a0how to get involved. If there is no\u00a0event taking place in your state,\u00a0we can help you plan one. \u00a0State House Events are\u00a0opportunities to meet face-to-face\u00a0with your elected officials and\u00a0advocate for legislation that\u00a0directly affects the rare disease\u00a0community. \u00a0\u00a0<a href=\"https:\/\/rarediseases.org\/shareyourstory\/\" target=\"_blank\" rel=\"noopener\">Share your patient story<\/a> &#8211; it may be\u00a0presented at your state&#8217;s event or\u00a0in meetings with legislators!<\/p>\n<p><strong>Proclamation Guide<\/strong><\/p>\n<p>Request a Rare Disease Day\u00a0<a href=\"https:\/\/rarediseaseday.us\/wp-content\/uploads\/2011\/11\/NORD-Proclamation-Guide-Oct-2015.pdf\" target=\"_blank\" rel=\"noopener nofollow\">proclamation<\/a> from your elected\u00a0officials to use in media outreach and\u00a0to share on social media. Together,\u00a0we can surpass the U.S. <a href=\"https:\/\/youtu.be\/r0vpEwcM8rM\" target=\"_blank\" rel=\"noopener nofollow\">record<\/a> for\u00a0Rare Disease Day, set in 2015! \u00a0Want to know if your state or\u00a0municipality has already issued a\u00a0proclamation? Contact Kristen Angell\u00a0at <a href=\"mailto:kangell@rarediseases.org\" target=\"_blank\" rel=\"noopener\">kangell@rarediseases.org<\/a>.<\/p>\n<p><strong><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/business-events-calendar-banner1.jpg\" data-rel=\"lightbox-image-1\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-23087\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/business-events-calendar-banner1-150x150.jpg\" alt=\"business-events-calendar-banner1\" width=\"83\" height=\"83\" \/><\/a>Promote Your Event<\/strong><\/p>\n<p>NORD will help publicize your events\u00a0on the <a href=\"https:\/\/rarediseaseday.us\/\" target=\"_blank\" rel=\"noopener nofollow\">U.S.<\/a> and <a href=\"https:\/\/rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener nofollow\">global<\/a> websites and\u00a0on social media. Tell us what you are\u00a0planning &#8211; it&#8217;s easy with this <a href=\"https:\/\/rarediseaseday.us\/events\/tell-us-what-youre-doing\/\" target=\"_blank\" rel=\"noopener nofollow\">form<\/a>.<\/p>\n<p><strong><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/rdd-logo-official-no-wording.jpg\" data-rel=\"lightbox-image-2\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><br \/>\n<\/a><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/rdd-social-profile.jpg\" data-rel=\"lightbox-image-3\" data-rl_title=\"\" data-rl_caption=\"\" title=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-23090\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/rdd-social-profile-150x150.jpg\" alt=\"rdd-social-profile\" width=\"83\" height=\"83\" \/><\/a>Social Media: #RareDiseaseDay<\/strong><\/p>\n<p>Did you miss the socialmedia webinar\u00a0hosted by EURORDIS (the world\u00a0sponsor of Rare Disease Day)? No\u00a0problem \u2013 watch it here to get greattips on howto build excitement!<\/p>\n<p><strong><br \/>\n<img loading=\"lazy\" decoding=\"async\" class=\" wp-image-23089 alignleft\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/rdd-logo-official-no-wording-150x150.jpg\" alt=\"rdd-logo-official-no-wording\" width=\"83\" height=\"83\" \/>Official Logo and Usage<\/strong><br \/>\nThe Rare Disease Day logo is a\u00a0registered trademark. Questions on\u00a0how to use it? Consult the official Style Guide.<\/p>\n<p>&nbsp;<\/p>\n<p><strong><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-23088 alignleft\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2015\/12\/fundraise-150x150.png\" alt=\"fundraise\" width=\"83\" height=\"83\" \/>Fundraise<\/strong><br \/>\nDo you have questions about\u00a0fundraising for NORD around Rare\u00a0Disease Day? <a href=\"mailto:dkempe@rarediseases.org\" target=\"_blank\" rel=\"noopener\">Send us<\/a>\u00a0your questions and we are happy to help!<\/p>\n<p>&nbsp;<\/p>\n<p><strong><br \/>\nStay tuned for more updates and the new U.S. Rare Disease Day\u00a0<\/strong><strong>website \u2013 coming soon!<\/strong><\/p>\n<p>Questions? Planning an event? We want to hear from\u00a0you! Contact us at <a href=\"mailto:rdd-us@rarediseases.org\" target=\"_blank\" rel=\"noopener\">rdd-us@rarediseases.org<\/a>.<\/p>\n<p>Rare Disease Day is sponsored and hosted in the U.S. by NORD. NORD is a member of the National\u00a0Alliances, a group of umbrella organizations that work with Rare Disease Day founder, EURORDIS, to\u00a0organize and present Rare Disease Day.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients&#8217; lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.<\/p>\n","protected":false},"author":1,"featured_media":12086,"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":[232,503,190,662,210,191,192,505,504,193],"tags":[],"class_list":["post-58675","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-events","category-featured-news","category-get-involved","category-industry","category-medical","category-patients-members","category-patient-stories","category-press-releases","category-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58675","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=58675"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58675\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12086"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58675"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58675"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58675"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}