{"id":8871,"date":"2022-01-27T17:17:44","date_gmt":"2022-01-27T17:17:44","guid":{"rendered":"https:\/\/epitomestaging.com\/tnc\/?page_id=8871"},"modified":"2024-09-16T16:01:22","modified_gmt":"2024-09-16T16:01:22","slug":"patient-resources","status":"publish","type":"page","link":"https:\/\/epitomestaging.com\/tnc\/patient-resources\/","title":{"rendered":"Patient Resources"},"content":{"rendered":"

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Patient Engagement<\/h1>\n

” content_phone=”<\/p>\n

Patient Engagement<\/h1>\n

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For Patients<\/h1>\n

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Patient Resources<\/h2>\n

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Research Information for Families<\/h3>\n

This page offers appealing multimedia material designed for non-scientists and even young children. It includes animated videos, comic books, and more links to engage the general public in the process of medical research.<\/p>\n

BCH WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/02\/logo-everylife.png” alt=”EveryLife Logo” title_text=”logo-everylife” url=”https:\/\/everylifefoundation.org\/” show_bottom_space=”off” align=”center” _builder_version=”4.23″ _module_preset=”default” module_alignment=”center” max_height=”70px” max_height_tablet=”100px” max_height_phone=”100px” max_height_last_edited=”on|phone” custom_margin=”||||false|false” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”20px|11px|50px||false|false” hover_enabled=”0″ border_width_bottom=”1px” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

Guide to Patient Involvement<\/h3>\n

The Everylife Foundation empowers the rare-disease community by advocating for effective, science-driven legislation toward equitable development of and access to lifesaving diagnoses, treatments, and cures.<\/p>\n

Everylife WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/02\/FDa-Logo-Blue-medium-01.png” alt=”FDA Logo” title_text=”FDa-Logo-Blue—medium-01″ url=”https:\/\/www.fda.gov\/patients\/learn-about-fda-patient-engagement\/fda-patient-engagement-opportunities” show_bottom_space=”off” align=”center” _builder_version=”4.23″ _module_preset=”default” module_alignment=”center” max_height=”70px” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”20px|11px|50px||false|false” hover_enabled=”0″ border_width_bottom=”1px” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

Patient Engagement Opportunities<\/h3>\n

The US Food & Drug Administration leads an initiative for patient engagement to incorporate patient concerns within the nation\u2019s strategy for drug development.\u00a0They convene patient engagement events, public discussions, listening sessions, forums, and public advisory meetings.<\/p>\n

FDA WEBSITE ><\/a><\/p>\n

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Clinical Research and You<\/h3>\n

Do you wonder, “Why should I participate in clinical trials?” This page clearly makes the case for what\u2019s in it for you and society at large.<\/p>\n

NIH WEBSITE ><\/a><\/p>\n

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What is “Informed Consent”?<\/h3>\n

The Office for Human Research Protections at the US Department of Health and Human Services educates patients about participation in medical research, with particular emphasis on the informed consent process. Their webpage includes informational videos and other forms of guidance helpful for potential trial participants.<\/p>\n

HHS WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/03\/logo-NORD.jpg” alt=”NORD Logo” title_text=”logo-NORD” url=”https:\/\/rarediseases.org\/” show_bottom_space=”off” align=”center” _builder_version=”4.23″ _module_preset=”default” module_alignment=”center” max_height=”120px” max_height_tablet=”90px” max_height_phone=”90px” max_height_last_edited=”on|phone” custom_margin=”||0px|||” custom_padding=”||18px||false|false” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”20px|11px|50px||false|false” hover_enabled=”0″ border_width_bottom=”1px” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

Empowering the Rare Disease Community<\/h3>\n

The National Organization for Rare Disorders (NORD) website offers many tools for patients and families affected by rare diseases, including: webinars, databases, factsheets, fundraising resources and conferences.<\/p>\n

NORD WEBSITE ><\/a><\/p>\n

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Patient Guide to Stem Cell Treatments<\/h3>\n

The International Society for Stem Cell Research provides an educational resource empowering patients and the public with trusted, essential stem cell knowledge to make informed health decisions. An accessible overview and downloadable Patient Guide to Stem Cell Treatments, developed by leading stem cell scientists worldwide, can be found at their patient resource site using the link below.<\/p>\n

ISSCR WEBSITE ><\/a><\/p>\n

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For PatientsPatient ResourcesResearch Information for Families This page offers appealing multimedia material designed for non-scientists and even young children. It includes animated videos, comic books, and more links to engage the general public in the process of medical research. BCH WEBSITE >Guide to Patient Involvement The Everylife Foundation empowers the rare-disease community by advocating for […]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-8871","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/8871","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/comments?post=8871"}],"version-history":[{"count":49,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/8871\/revisions"}],"predecessor-version":[{"id":12584,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/8871\/revisions\/12584"}],"wp:attachment":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/media?parent=8871"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}