{"id":58969,"date":"2018-12-13T14:23:21","date_gmt":"2018-12-13T19:23:21","guid":{"rendered":"https:\/\/rarediseases.org\/year-end-message-from-nords-president-and-ceo\/"},"modified":"2018-12-13T14:23:21","modified_gmt":"2018-12-13T19:23:21","slug":"year-end-message-from-nords-president-and-ceo","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/year-end-message-from-nords-president-and-ceo\/","title":{"rendered":"Year-End Message from NORD&#8217;s President and CEO"},"content":{"rendered":"<p>For more than 35 years, NORD has been the voice of the rare disease community. Whether it\u2019s advocating in Washington, protecting the <em>Orphan Drug Act<\/em>, working with the FDA to integrate the patient\u2019s voice or providing assistance to those in need, NORD is the organization the rare disease community and patients rely on.<\/p>\n<p>And, we rely on you!<\/p>\n<p>Without your continued and ongoing support, we would not be able to deliver these valuable services to patients in need.<\/p>\n<p>As we enter 2019, I hope you\u2019ll <a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/salsa\/donation\/common\/public\/?donate_page_KEY=14286&amp;track=2018Blog-Peter-Letter\" target=\"_blank\" rel=\"noopener nofollow\">join me in supporting the one in ten Americans<\/a> whose lives have been affected by rare diseases.<\/p>\n<p>With your help, NORD can continue to:<\/p>\n<ul>\n<li>Provide\u00a0<a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/salsa\/donation\/common\/public\/?donate_page_KEY=14286&amp;track=2018Blog-Peter-Letter\" target=\"_blank\" rel=\"noopener nofollow\"><strong>access to assistance programs<\/strong><\/a>\u00a0that have helped more than 8,000 families so far this year.<\/li>\n<li>Build\u00a0<a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/salsa\/donation\/common\/public\/?donate_page_KEY=14286&amp;track=2018Blog-Peter-Letter\" target=\"_blank\" rel=\"noopener nofollow\"><strong>awareness and education programs<\/strong><\/a>\u00a0to promote earlier diagnosis and state-of-the-art care for patients.<\/li>\n<li>Award\u00a0<a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/salsa\/donation\/common\/public\/?donate_page_KEY=14286&amp;track=2018Blog-Peter-Letter\" target=\"_blank\" rel=\"noopener nofollow\"><strong>seed funding\u00a0to researchers<\/strong><\/a> seeking to better understand rare diseases and to develop innovative new treatments for patients with rare diseases<\/li>\n<\/ul>\n<p>Your support makes a difference!\u00a0Please consider making a <a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/salsa\/donation\/common\/public\/?donate_page_KEY=14286&amp;track=2018Blog-Peter-Letter\" target=\"_blank\" rel=\"noopener nofollow\">tax-deductible donation<\/a> today and remember that NORD is 4-star rated by Charity Navigator, and that 90% of all patient assistance gifts go directly back to patients.<\/p>\n<p>On behalf of all of us at NORD, thank you for helping those in need this holiday season.<\/p>\n<p>Alone we are rare. Together, we are strong.<\/p>\n<p>Sincerely,<\/p>\n<p>Peter L. Saltonstall<br \/>\nPresident and CEO of NORD<\/p>\n","protected":false},"excerpt":{"rendered":"<p>For more than 35 years, NORD has been the voice of the rare disease community. Whether it\u2019s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/year-end-message-from-nords-president-and-ceo\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abYear-End Message from NORD&#8217;s President and CEO\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"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":[190,662],"tags":[1819,1817,706,225,262,1818,243,228,383,1820],"class_list":["post-58969","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-get-involved","tag-1-in-10","tag-charity-navigator","tag-education","tag-nord","tag-orphan-drug-act","tag-patient-assistance","tag-peter-l-saltonstall","tag-rare-diseases","tag-research","tag-together-we-are-strong"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58969","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58969"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58969\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58969"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58969"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58969"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}