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From 2004 to 2024, the Health Resources and Services Administration (HRSA) funded the National Coordinating Center for the Regional Genetics Networks (NCC). NCC developed and maintained the Genetics Policy Hub.<\/p>\n
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With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.<\/p>\n
[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.16″ _module_preset=”default” background_enable_image=”off” top_divider_color=”#ffffff” top_divider_height=”15px” bottom_divider_style=”asymmetric” bottom_divider_color=”#ffffff” bottom_divider_height=”25px” bottom_divider_repeat=”1x” global_colors_info=”{}”][et_pb_fullwidth_post_title meta=”off” featured_image=”off” text_color=”light” admin_label=”Fullwidth Post Title” _builder_version=”4.16″ _module_preset=”default” title_text_align=”center” use_background_color_gradient=”on” background_color_gradient_direction=”145deg” background_color_gradient_stops=”#0f0f24 28%|#ad345e 100%” background_color_gradient_start=”#0f0f24″ background_color_gradient_start_position=”28%” background_color_gradient_end=”#ad345e” custom_padding=”34px||34px||false|false” custom_padding_tablet=”34px||34px||false|false” custom_padding_phone=”20px||20px||false|false” custom_padding_last_edited=”on|phone” title_font_size_tablet=”40px” title_font_size_phone=”30px” title_font_size_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_fullwidth_post_title][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.17.3″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n
Many organizations develop helpful resources that can assist you in understanding the policy system or help understand a specific genetics policy. To help assist you, we have compiled a list of resources developed by organizations beyond the Genetics Policy Hub that could be useful.\u00a0<\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ _module_preset=”default” use_background_color_gradient=”on” background_color_gradient_direction=”280deg” background_color_gradient_stops=”#240b36 0%|#2c2335 100%” background_color_gradient_start=”#240b36″ background_color_gradient_end=”#2c2335″ global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_video src=”https:\/\/www.youtube.com\/watch?v=fsTaP7jDfrs&t=751s” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_video][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
The Heartland Regional Genetics Network (HRGN) helps provide information about letters of medical necessity with a webinar that discusses the topic and a list of resources to help providers write a letter of medical necessity on their<\/span> website<\/a>.<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”|0px||||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_tabs active_tab_background_color=”#240B36″ inactive_tab_background_color=”#AD345E” active_tab_text_color=”#ffffff” _builder_version=”4.16″ _module_preset=”default” tab_text_color=”#ffffff” tab_font=”Libre Franklin||||||||” border_radii=”on|16px|16px|16px|16px” box_shadow_style=”preset1″ global_colors_info=”{}”][et_pb_tab title=”General Policy Resources” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n Ask A Policy Expert<\/a> Policy Issues in Genomics<\/a> <\/em><\/p>\n How A Bill Becomes Law<\/a> <\/em><\/p>\n Timeline Of the Genetic Information Nondiscrimination Act (GINA)<\/a> Talking Glossary of Genetics Terms<\/a> Understand How Health Insurance Works<\/a> Prior Authorization <\/a> Health Coverage Basics <\/a> [\/et_pb_tab][et_pb_tab title=”Patient Resources” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n Pathways To Medicaid Coverage For Children And Youth with Special Health Care Needs<\/a> Community Based Resources For Families<\/a> <\/span>Patient Advocate Foundation Resources<\/a> Genetic Information Nondiscrimination Act Patient Resource<\/a> [\/et_pb_tab][et_pb_tab title=”Provider Resources” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Developed by: The Catalyst Center<\/em>
“The Catalyst Center team has over 15 years of experience in policies related to health care financing and coverage for children. Our policy focus among children is children and youth with special health care needs, which we define as children who \u201chave or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.\u201d”<\/p>\n
Developed by: National Human Genome Research Institute (NHGRI)<\/em>
<\/em>NHGRI publishes information on coverage and regulation of genetics testing, genetic discrimination, genome editing, health disparities, human subjects research, informed consent, intellectual property, investigative genomics, genomics privacy, and synthetic biology.<\/p>\n
Developed by: National Human Genome Research Institute (NHGRI)<\/em>
<\/em>Learn how a bill becomes a law from NHGRI.<\/p>\n
Developed by: National Human Genome Research Institute (NHGRI)<\/em>
<\/em>NHGRI published information about GINA, a federal law that provides protection to genetic information.<\/p>\n
Developed by: National Human Genome Research Institute (NHGRI)<\/em>
<\/em>Learn about genetic terms via the NHGRI.<\/p>\n
Developed by: Kaiser Family Foundation<\/em>
The Kaiser Family Foundation provides information about how to obtain health insurance, including the open enrollment period for the Marketplace, insurance through the government.<\/p>\n
Developed by: American Medical Association (AMA)<\/em>
The AMA developed an overview of what prior authorization is, which is a tool used by insurance companies that require services must be pre-approved before they occur if they are to be covered by the insurance company.<\/p>\n
Developed by: Center for Medicare and Medicaid Services (CMS)<\/em>
Learn about the basics of getting health insurance through the Marketplace at this CMS developed site.<\/p>\n
Developed by: The Catalyst Center<\/em>
The Catalyst Center presents an infographic about how to obtain Medicaid for children with special healthcare needs.<\/p>\n
Developed by: The Catalyst Center<\/em>
The Catalyst Center compiles community-based resources for families of children with special healthcare needs.<\/p>\n
Developed by: Patient Advocate Foundation<\/em>
Interested in advocacy resources? Learn more about advocacy at the Patient Advocate Foundation.<\/p>\n
Developed by: National Human Genome Research Institute (NHGRI)
<\/em>A resource for patients that provides information about the Genetic Information Nondiscrimination Act (GINA) from NHGRI.<\/p>\n