{"id":11468,"date":"2023-08-02T17:20:12","date_gmt":"2023-08-02T17:20:12","guid":{"rendered":"https:\/\/epitomestaging.com\/tnc\/?page_id=11468"},"modified":"2025-10-06T15:33:14","modified_gmt":"2025-10-06T15:33:14","slug":"advocacy-supports","status":"publish","type":"page","link":"https:\/\/epitomestaging.com\/tnc\/advocacy-supports\/","title":{"rendered":"Advocacy Supports"},"content":{"rendered":"

[et_pb_section fb_built=”1″ admin_label=”Header Section” _builder_version=”4.16″ _module_preset=”default” background_color=”#bbe4ed” background_image=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/02\/rsz-tnc-header-engagement-1000×200-1.jpg” background_size=”initial” background_position=”top_center” width_phone=”auto” width_last_edited=”off|desktop” max_width_last_edited=”off|desktop” module_alignment=”center” min_height_tablet=”300px” min_height_last_edited=”off|desktop” height=”200px” height_tablet=”154px” height_phone=”100px” height_last_edited=”on|phone” max_height_tablet=”300px” max_height_phone=”300px” max_height_last_edited=”off|desktop” custom_margin=”0px||0px||false|false” custom_padding=”0px||0px||false|false” top_divider_height_tablet=”” top_divider_height_phone=”50px” top_divider_height_last_edited=”on|phone” bottom_divider_style=”curve” bottom_divider_color=”#FFFFFF” bottom_divider_height=”70px” bottom_divider_arrangement=”above_content” bottom_divider_height_tablet=”70px” bottom_divider_height_phone=”50px” bottom_divider_height_last_edited=”on|desktop” background_last_edited=”on|tablet” background_image_phone=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/02\/rsz-tnc-mobile-stars.jpg” background_enable_image_phone=”on” parallax_tablet=”off” parallax_phone=”off” background_size_tablet=”contain” background_size_phone=”initial” background_position_tablet=”top_center” background_position_phone=”top_right” background_enable_video_mp4_tablet=”off” background_enable_video_mp4_phone=”off” module_alignment_tablet=”right” module_alignment_phone=”left” module_alignment_last_edited=”off|desktop” locked=”off” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”1″ _builder_version=”4.16″ _module_preset=”default” module_alignment=”center” custom_margin=”0px||||false|false” custom_padding=”0px||||false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text content_tablet=”<\/p>\n

For Patient Advocacy Groups<\/h1>\n

” content_phone=”<\/p>\n

For Patient Advocacy Groups<\/h1>\n

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For Patient Advocacy Groups<\/h1>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Title Section” _builder_version=”4.16″ _module_preset=”default” background_enable_color=”off” custom_margin=”20px||6px||false|false” custom_padding=”0px||0px||false|false” locked=”off” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_padding=”0px|0px|0|0px|false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.22.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Advocacy Supports<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Partners Section” _builder_version=”4.16″ _module_preset=”default” custom_padding=”0px||30px|||” global_colors_info=”{}”][et_pb_row column_structure=”2_3,1_3″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”2px||2px|||” global_colors_info=”{}”][et_pb_column type=”2_3″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

The Translational Neuroscience Center provides hope for the more than 400 million people affected by rare disorders around the globe. We fulfill our mission by helping patients and advocacy groups find and build communities, gain access to information and resources, and connect to researchers. The organizations and resources provided below can help support patient advocacy organizations as they further develop their research partnerships, infrastructure, and funding models.<\/p>\n

The table below is adapted from our 2023 article, “Emerging roles and opportunities for rare disease patient advocacy groups\u201d in Therapeutic Advances in Rare Disease (Vol. 4: 1\u201318). You can read the article HERE<\/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\/2024\/09\/kira-advocacy-paper.png” alt=”Ther Adv Rare Dis Publication” title_text=”kira-advocacy-paper” url=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/08\/Dies-2023-Emerging-roles-and-opportunities-for-rare-disease-patient-advocacy-groups.pdf” url_new_window=”on” show_bottom_space=”off” align=”center” _builder_version=”4.27.4″ _module_preset=”_initial” background_color=”#f2f2f2″ height=”275px” custom_padding=”20px||10px||false|false” locked=”off” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” background_color=”#f2f2f2″ custom_margin=”0px||||false|false” custom_padding=”10px|25px|10px|25px|true|true” locked=”off” global_colors_info=”{}”]<\/p>\n

Download the article here ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Partners Section” _builder_version=”4.16″ _module_preset=”default” custom_padding=”0px||30px|||” global_colors_info=”{}”][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.22.0″ _module_preset=”default” custom_padding=”0px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/09\/logo-global-genes.jpg” alt=”Global Genes Logo” title_text=”logo-global-genes” url=”https:\/\/globalgenes.org” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.22.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Global Genes<\/strong>
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally<\/p>\n

GLOBAL GENES WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.22.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/09\/logo-combined.jpeg” alt=”Combined Logo” title_text=”logo-combined” url=”https:\/\/combinedbrain.org” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.22.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Combined Brain<\/strong>
Combined Brain is a non-profit consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent.<\/p>\n

COMBINED BRAIN WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.22.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/09\/logo-ren.png” alt=”Rare Epilepsy Network Logo” title_text=”logo-ren” url=”https:\/\/www.rareepilepsynetwork.org\/starting-a-rare-org” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.22.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” custom_margin=”0px||||false|false” custom_margin_tablet=”-20px||||false|false” custom_margin_phone=”-20px||||false|false” custom_margin_last_edited=”on|tablet” global_colors_info=”{}”]<\/p>\n

Rare Epilepsy Network<\/strong>
REN is comprised of mature organizations as well as those newly formed. We are frequently asked for resources for starting a new rare epilepsy organization. There are many resources for starting a nonprofit.<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/09\/logo-simons-searchlight.png” alt=”Simons Searchlight Logo” title_text=”logo-simons-searchlight” url=”https:\/\/www.simonssearchlight.org” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.22.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”||20px||false|false” global_colors_info=”{}”]<\/p>\n

Simons Searchlight<\/strong>
Simons Searchlight is an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders.<\/p>\n

Simons Searchlight WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Resource Table Section” _builder_version=”4.21.0″ _module_preset=”default” background_color=”#f2f2f2″ custom_padding=”0px||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.21.2″ _module_preset=”default” custom_margin=”|auto|-1px|auto||” custom_padding=”39px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Guidelines for Patient Engagement in Research” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

Guidelines for Patient Engagement in Research<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ admin_label=”Row” _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/Logo-EveryLife.png” alt=”EveryLife Logo” title_text=”Logo-EveryLife” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]EveryLife Foundation<\/strong>
\nGuide based on FDA recommendations on inclusion of patient experience in rare disorder therapy development.<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-ctti.png” alt=”CTTI Logo” title_text=”logo-ctti” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

CTTI<\/strong>
Framework for ensuring patient advocacy group engagement throughout the entire clinical trial process.<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_style_bottom=”none” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/Logo-NIH-GARD-Toolkit.png” alt=”NIH GARD Toolkit Logo” title_text=”Logo-NIH-GARD-Toolkit” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||24px||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||20px||false|false” global_colors_info=”{}”]<\/p>\n

NCATS<\/strong>
Toolkit for Patient-Focused Therapy Development (NCATS Toolkit)<\/p>\n

NCATS 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||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_margin=”|auto|0px|auto||” custom_padding=”41px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Guidance for PAG Development and Growth” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

Guidance for PAG Development and Growth<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_margin=”1px|auto||auto||” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _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_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||1px||false|false” global_colors_info=”{}”]NORD<\/strong>
\nMentorship for growing a patient organization\/nonprofit<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo2-global-genes.png” alt=”Global Genes Logo” title_text=”logo2-global-genes” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]Global Genes- Building a Foundation<\/strong>
\nDetailed toolkit for starting and building a foundation<\/p>\n

GLOBAL GENES PDF ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/Logo-foundation-group.png” alt=”Foundation Group Logo” title_text=”Logo-foundation-group” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||28px||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]Foundation Group<\/strong>
\nService for applying and maintaining 501c3 status<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.21.0″ _module_preset=”default” background_color=”#f2f2f2″ custom_padding=”0px||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_margin=”|auto|0px|auto||” custom_padding=”41px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Guidance on Data Collection” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

Guidance on Data Collection<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”10px||20px||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo2-global-genes.png” alt=”Global Genes Logo” title_text=”logo2-global-genes” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||25px||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]Global Genes- Data DIY<\/strong>
\nGuide for collecting and working with data<\/p>\n

GLOBAL GENES DIY WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”0px||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_margin=”|auto|0px|auto||” custom_padding=”41px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”PAG Leadership Development” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

PAG Leadership Development<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-milken-institute.png” alt=”Milken Institute Logo” title_text=”logo-milken-institute” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”70%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]Faster Cures Milken Institute<\/strong>
\nProgram to build leadership skills and network through mentorship, capstone project, and virtual collaboration<\/p>\n

MILKEN INSTITUTE WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/Logo-EveryLife.png” alt=”EveryLife Foundation Logo” title_text=”Logo-EveryLife” _builder_version=”4.27.0″ _module_preset=”_initial” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]YARR Leadership Academy<\/strong>
\nOnline academy for young adults in the rare disease community who are interested in learning more about advocacy, policy making, therapeutic development, and regulatory processes<\/p>\n

EVERYLIFE FOUNDATION 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” background_color=”#f2f2f2″ custom_padding=”0px||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_margin=”|auto|0px|auto||” custom_padding=”41px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Research Networks and Research Funding” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

Research Networks and Research Funding<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-milken-institute.png” alt=”Milken Institute Logo” title_text=”logo-milken-institute” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”70%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]Faster Cures Milken Institute<\/strong>
\nNetwork of over 160 foundations taking a \u201cventure philanthropy\u201d approach to funding medical research<\/p>\n

Milken Institute WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2022\/02\/logo-RDCRN-520×120-1.png” alt=”Rare Diseases Logo” title_text=”logo-RDCRN-520×120″ url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

NIH Rare Diseases Clinical Research Network (RDCRN)<\/strong>
Network of patient advocacy groups affiliated with the NIH RDCRN promoting collaboration and better access to rare disease research<\/p>\n

Rare Diseases WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-chan-zuckerberg.png” alt=”Chan Zuckerberg Initiative Logo” title_text=”logo-chan-zuckerberg” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”70%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||26px||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

Chan Zuckerberg Initiative<\/strong>
Funding opportunities for research and community building<\/p>\n

CHAN ZUCKERBERG INITIATIVE WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”0px||29px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” custom_margin=”|auto|0px|auto||” custom_padding=”41px||0px||false|” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Guidance on Data Collection” _builder_version=”4.21.2″ _module_preset=”default” header_3_text_color=”#0c859e” background_enable_color=”off” custom_margin=”||||false|false” custom_padding=”10px|11px|||false|false” global_colors_info=”{}”]<\/p>\n

Other Supports<\/h3>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”10px||10px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-neurojourney.png” alt=”NeuroJourney Logo” title_text=”logo-neurojourney” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

NeuroJourney<\/strong>
Tool to support caregivers of children with complex neurological medical needs<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2024\/09\/logo-RDDC.png” alt=”RDDC Logo” title_text=”logo-RDDC” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

The Rare Disease Diversity Coalition<\/strong>
Network dedicated to addressing the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH).<\/p>\n

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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.21.0″ _module_preset=”default” custom_padding=”20px||20px||false|false” border_width_bottom=”1px” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/epitomestaging.com\/tnc\/wp-content\/uploads\/2023\/09\/logo-simons-searchlight.png” alt=”RDDC Logo” title_text=”logo-RDDC” url_new_window=”on” show_bottom_space=”off” _builder_version=”4.27.0″ _module_preset=”_initial” width=”80%” width_tablet=”30%” width_phone=”60%” width_last_edited=”on|desktop” module_alignment=”center” custom_padding=”||||false|false” custom_padding_tablet=”0px||||false|false” custom_padding_phone=”0px||||false|false” custom_padding_last_edited=”on|phone” module_alignment_tablet=”left” module_alignment_phone=”center” module_alignment_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.0″ _module_preset=”default” background_enable_color=”off” custom_margin=”||||false|false” custom_margin_tablet=”||||false|false” custom_margin_phone=”||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”]<\/p>\n

Simons Searchlight Event Planning Toolkit\u00a0<\/strong>
Event planning toolkit, designed in collaboration with Global Genes, for patient advocacy members.<\/p>\n

SIMONS SEARCHLIGHT WEBSITE ><\/a><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

For Patient Advocacy GroupsAdvocacy SupportsThe Translational Neuroscience Center provides hope for the more than 400 million people affected by rare disorders around the globe. We fulfill our mission by helping patients and advocacy groups find and build communities, gain access to information and resources, and connect to researchers. The organizations and resources provided below can […]<\/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-11468","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/11468","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=11468"}],"version-history":[{"count":53,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/11468\/revisions"}],"predecessor-version":[{"id":13122,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/11468\/revisions\/13122"}],"wp:attachment":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/media?parent=11468"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}