{"id":58916,"date":"2018-04-18T19:59:53","date_gmt":"2018-04-18T23:59:53","guid":{"rendered":"https:\/\/rarediseases.org\/take-action-join-nord-over-100-patient-organizations-in-supporting-the-rare-act\/"},"modified":"2018-04-18T19:59:53","modified_gmt":"2018-04-18T23:59:53","slug":"take-action-join-nord-over-100-patient-organizations-in-supporting-the-rare-act","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/take-action-join-nord-over-100-patient-organizations-in-supporting-the-rare-act\/","title":{"rendered":"TAKE ACTION: Join NORD &#038; Over 100 Patient Organizations in Supporting the RARE Act"},"content":{"rendered":"<div>An exciting new piece of legislation known as the RARE Act\u00a0(Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115)\u00a0was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:<\/div>\n<ul>\n<li>Increasing\u00a0rare\u00a0disease research funding\u00a0at the National Institutes of Health (NIH) by authorizing an additional $10 million each year for the\u00a0Rare\u00a0Disease Clinical Research Network (RDCRN)<\/li>\n<li>Creating new efforts to track and combat\u00a0rare\u00a0diseases\u00a0at the Centers for Disease Control and Prevention (CDC) by creating the &#8220;National\u00a0Rare\u00a0Disease or Condition Surveillance System&#8221;<\/li>\n<li>Educating physicians on\u00a0rare\u00a0diseases\u00a0through new programs at\u00a0the Agency for Healthcare Research and Quality (AHRQ), and,<\/li>\n<li>Commissioning additional research\u00a0on how to better incentivize\u00a0rare\u00a0disease therapeutic development.<\/li>\n<\/ul>\n<div>Today, NORD sent a\u00a0<a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2018\/04\/Coalition-Support-Letter-for-the-RARE-Act-Final-4.18.18.pdf\" target=\"_blank\" rel=\"noopener\">letter<\/a>\u00a0in support of the RARE Act to Congress that was\u00a0signed by over 100 rare disease patient organizations\u00a0(to view or share the letter, please\u00a0<a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2018\/04\/Coalition-Support-Letter-for-the-RARE-Act-Final-4.18.18.pdf\" target=\"_blank\" rel=\"noopener\">click here<\/a>).<\/div>\n<div>NORD is incredibly grateful for those organizations that lent their support. We hope the rare disease community will join us by\u00a0calling and emailing their Representatives to make our community&#8217;s message loud and clear!<\/div>\n<div><\/div>\n<div style=\"text-align: center;\">\n<hr \/>\n<p><a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/dia\/action4\/common\/public\/?action_KEY=21644\" target=\"_blank\" rel=\"noopener nofollow\"><strong>CLICK HERE TO CALL<\/strong><\/a> | <strong><a href=\"https:\/\/salsa3.salsalabs.com\/o\/51076\/p\/dia\/action4\/common\/public\/?action_KEY=21642\" target=\"_blank\" rel=\"noopener nofollow\">CLICK HERE TO EMAIL\u00a0<\/a><\/strong><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>An exciting new piece of legislation known as the RARE Act\u00a0(Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115)\u00a0was recently introduced by Congressmen Carson and Costello. This legislation would &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/take-action-join-nord-over-100-patient-organizations-in-supporting-the-rare-act\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;TAKE ACTION: Join NORD &#038; Over 100 Patient Organizations in Supporting the RARE Act&#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":[232,662],"tags":[1535,511,1533,498,1534,265,1531,1536,1532,266],"class_list":["post-58916","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-get-involved","tag-agency-for-healthcare-research-and-quality","tag-cdc","tag-centers-for-disease-control","tag-national-institutes-of-health","tag-national-rare-disease-or-condition-surveillance-system","tag-nih","tag-rare-act","tag-rare-disease-advancemenet-research-and-education-act","tag-rare-disease-clinical-research-network","tag-rare-disease-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58916","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=58916"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58916\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58916"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58916"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58916"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}