{"id":58533,"date":"2014-07-11T00:00:37","date_gmt":"2014-07-11T04:00:37","guid":{"rendered":"https:\/\/rarediseases.org\/nord-at-capitol-hill-hearing-patients-have-unique-perspective-that-needs-to-be-heard\/"},"modified":"2014-07-11T00:00:37","modified_gmt":"2014-07-11T04:00:37","slug":"nord-at-capitol-hill-hearing-patients-have-unique-perspective-that-needs-to-be-heard","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-at-capitol-hill-hearing-patients-have-unique-perspective-that-needs-to-be-heard\/","title":{"rendered":"NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p>NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing hosted by the House Energy &amp; Commerce Committee Subcommittee on Health as part of the 21st Century Cures initiative.<!--more--><\/p>\n<p>&#8220;When we ask patients &#8216;What is the worst thing about your disease?&#8217;, we are often surprised by their answers,&#8221; Dr. Summar said. The direct experiences of patients and their families are unique and extremely important to the process of drug discovery and development, he added.<\/p>\n<p>On behalf of NORD, Dr. Summar presented nine recommendations for accelerating the pace of medical innovation and improving the lives of patients and their families. \u00a0The nine recommendations are:<\/p>\n<ul>\n<li>Establish a Commission and National Plan to Determine Priorities, Methods, Resource Needs and a Consistent Agenda on Rare Disease Registries and Natural History Studies<\/li>\n<li>Significantly Reform the Institutional Review Board (IRB) System for Assessing New Therapies<\/li>\n<li>Ensure that All Current Laws that Increase Patients&#8217; Involvement are Implemented Fully<\/li>\n<li>Ensure Sufficient and Consistent Resources, Direction and Funding for the Food and Drug Administration and National Institutes of Health<\/li>\n<li>Commission a &#8220;National Plan for Rare Diseases&#8221;<\/li>\n<li>Enhance the Focus on Clinical Trial Design and Endpoint Development within the NIH Division of Clinical Innovation within the National Center for Advancing Translational Sciences (NCATS)<\/li>\n<li>Create an &#8220;Orphan Protected Class&#8221; within the Medicare Part D Program<\/li>\n<li>Establish Clearer Federal Policies with Regard to Off-label use of Drugs<\/li>\n<li>Ensure Reimbursement for Medical Foods<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-at-capitol-hill-hearing-patients-have-unique-perspective-that-needs-to-be-heard\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard&#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":[232,190],"tags":[439,440,441,442,261],"class_list":["post-58533","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","tag-21st-centure-cures","tag-advancing-innovation","tag-dr-marshall-summars","tag-house-energy-commerce","tag-mary-dunkle"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58533","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=58533"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58533\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58533"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58533"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58533"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}