[et_pb_section fb_built=”1″ _builder_version=”4.27.6″ _module_preset=”default” background_image=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png” background_position=”bottom_center” background_vertical_offset=”20%” custom_padding=”15px||15px||true|false” background_last_edited=”on|desktop” background_position_tablet=”bottom_right” background_position_phone=”center_right” global_module=”28071″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.4″ _dynamic_attributes=”title” _module_preset=”default” title_font=”–et_global_heading_font|300|||||||” title_text_color=”#FFFFFF” title_font_size=”40px” custom_margin=”||3px|||” title_font_size_tablet=”” title_font_size_phone=”25px” title_font_size_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_heading][et_pb_button button_url=”\/contact-us\/” button_text=”Contact Us” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_size=”15px” button_text_color=”#C02E43″ button_bg_color=”rgba(10,22,64,0.53)” button_border_width=”0px” button_icon=”||divi||400″ button_icon_color=”#C02E43″ button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}” filter_opacity__hover_enabled=”on|hover” filter_opacity__hover=”70%”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.7″ _module_preset=”default” custom_padding=”0px||0px|0px|false|false” locked=”off” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.27.6″ _module_preset=”default” background_color=”#F2F2F2″ custom_padding=”40px|30px|40px|30px|true|false” border_radii=”on|20px|20px|20px|20px” box_shadow_style=”preset2″ box_shadow_vertical=”4px” box_shadow_blur=”8px” box_shadow_color=”rgba(0,0,0,0.1)” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.7″ _module_preset=”default” custom_margin=”||||false|false” custom_padding=”||0px||false|false” global_colors_info=”{}”]<\/p>\n
The ECDGA YouTube playlist, “Medical Professional Resources by ECDGA,” includes videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, research, and clinical best practices.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/youtube.com\/playlist?list=PLd9i5JBvapc7WGAnjTbvW8k-vGvvzx2oP&si=QykLJ3KafHcVDXEu” url_new_window=”on” button_text=”Watch Playlist” disabled_on=”off|off|off” _builder_version=”4.27.7″ _module_preset=”default” custom_button=”on” button_text_size=”16px” button_bg_color=”#C02E43″ button_border_radius=”8px” button_font=”|600|||||||” button_use_icon=”off” transform_translate_linked__hover=”off” custom_padding=”16px|30px|16px|30px|true|true” custom_css_main_element=”width: 100%;||text-align: center;” locked=”off” global_colors_info=”{}” transform_styles__hover_enabled=”on|hover” transform_scale__hover_enabled=”on|desktop” transform_translate__hover_enabled=”on|hover” transform_rotate__hover_enabled=”on|desktop” transform_skew__hover_enabled=”on|desktop” transform_origin__hover_enabled=”on|desktop” transform_translate__hover=”0px|-3px” button_text_color__hover_enabled=”on|hover” button_text_color__hover=”#FFFFFF”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n
The ECDGA is pleased to share that the National Comprehensive Cancer Network\u00ae (NCCN\u00ae)\u2014an alliance of leading cancer centers\u2014has published a new NCCN Guidelines\u00ae for Histiocytosis.\u00a0 These clinical practice guidelines provide the latest evidence and expert consensus for diagnosing and treating the three most common forms of histiocytosis in adults: Langerhans cell histiocytosis (LCH), Erdheim-Chester Disease (ECD,) and Rosai-Dorfman Disease (RDD).\u00a0 The NCCN Guidelines can help patients, families, and physicians access the latest information about symptoms, diagnosis, treatment, and more. The guidelines can also serve as a useful tool when seeking approvals for coverage of drugs and therapies. The guidelines are updated at least once a year and can be accessed at any time. Access your copy below or on PubMed.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.nccn.org\/guidelines\/guidelines-detail?category=1&id=1502″ url_new_window=”on” button_text=”NCCN Guidelines” button_alignment=”left” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||0px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n
ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes.\u00a0 The patient brochure is available to help new members of the community understand the basics of\u00a0ECD.\u00a0 The medical brochure is available to share with\u00a0your care team or any medical professional.\u00a0 Request a free copy by filling out this form.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” url_new_window=”on” button_text=”Request a Brochure” button_alignment=”left” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||9px||false|false” custom_padding=”||||false|false” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_3,1_3,1_3″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”6px||14px||false|false” global_colors_info=”{}”][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/pathology-resources\/” url_new_window=”on” button_text=”Pathology Resources” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/hematology\/” url_new_window=”on” button_text=”Hematology Resources” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/endocrinology-resources\/” url_new_window=”on” button_text=”Endocrinology Resources” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,1_4,1_4,1_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”0px||2vw||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/ECD-Neurology-Brochure-Decc-2023.pdf” url_new_window=”on” button_text=”Neurology” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/ECD-Ophthalmology-Card-5×7-Oct-2024.pdf” url_new_window=”on” button_text=”Opthalmology” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/Radiology-2024-ECD-Card-Final-11-13-24.pdf” url_new_window=”on” button_text=”Radiology” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/03\/Dermatology-Medical-Brochure-2026.pdf” url_new_window=”on” button_text=”Dermatology” button_alignment=”center” module_class=”full-button” _builder_version=”4.27.6″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||2vw||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n
Current\u00a0ECD studies and trials<\/a>\u00a0are listed online to assist physicians and patients.<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||2vw||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n Survivorship Issues in Adult Patients With Histiocytic Neoplasms<\/a><\/p>\n Expert guidelines for ECD care and treatment, written in 2020, can be found here: Erdheim-Chester disease: consensus recommendations for\u00a0evaluation, diagnosis, and treatment in the molecular era.<\/a><\/p>\n Expert presentation slides and videos<\/a> on ECD cases and ongoing research are listed under\u00a0Medical Symposium<\/a> or our YouTube<\/a> channel.<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||2vw||true|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n Medical providers that need assistance gaining approval for an ECD patient\u2019s care and medication can find more information here:\u00a0Filing Payer Appeals.<\/a><\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||2vw||true|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||16px|||” global_colors_info=”{}”]<\/p>\n Caring for Your Patient with a Rare Disease<\/a>\u00a0is provided by the NIH to help medical personnel when presented with a rare disease case, including tips for\u00a0ICD coding.<\/p>\n Find articles about Erdheim-Chester disease online using PubMed.<\/strong>\u00a0 PubMed is a free search engine used to access references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database of information retrieval. As of October 2021, there are 1,034 articles referencing \u201cErdheim Chester\u201d on Pubmed.<\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/pubmed.ncbi.nlm.nih.gov\/?term=erdheim+chester” url_new_window=”on” button_text=”Pubmed” button_alignment=”left” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”2vw||2vw||true|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n We are\u00a0the only private funder dedicated to ECD research.<\/p>\n Learn more about our research funding opportunities<\/a>.<\/p>\n Learn about scientific meetings the ECDGA will be hosting and attending<\/a>.<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" The ECDGA YouTube playlist, “Medical Professional Resources by ECDGA,” includes videos featuring medical professionals discussing Erdheim-Chester Disease (ECD) treatments, research, and clinical best practices.NCCN Guidelines The ECDGA is pleased to […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":" NCCN Guidelines<\/a><\/p>\r\nSurvivorship Issues in Adult Patients With Histiocytic Neoplasms<\/a> \r\n\r\nExpert guidelines for ECD care and treatment, written in 2020, can be found here: Erdheim-Chester disease: consensus recommendations for evaluation, diagnosis, and treatment in the molecular era.<\/a>\r\n\r\nExpert presentation slides and videos on ECD cases and ongoing research are listed under Medical Symposium<\/a> or our YouTube<\/a> channel.\r\n\r\nCurrent ECD studies and trials<\/a> are listed online to assist physicians and patients.\r\n\r\nMedical providers that need assistance gaining approval for an ECD patient\u2019s care and medication can find more information here: Filing Payer Appeals.<\/a>\r\n\r\nCaring for Your Patient with a Rare Disease<\/a> is provided by the NIH to help medical personnel when presented with a rare disease case, including tips for ICD coding.\r\n\r\nECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes. The patient brochure is available to help new members of the community understand the basics of ECD. The medical brochure is available to share with your care team or any medical professional. Request a free copy by filling out this form.\r\n Request a Brochure<\/a><\/p>\r\n \r\n\r\nFind articles about Erdheim-Chester disease online using PubMed.<\/strong> PubMed is a free search engine used to access references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database of information retrieval. As of October 2021, there are 1,034 articles referencing \u201cErdheim Chester\u201d on Pubmed.\r\n Pubmed<\/a><\/p>\r\n\r\nECDGA Presentations<\/h2>\n
Help with Payer Appeals<\/h2>\n
Peered Review Articles<\/h2>\n
For ECD researchers:<\/h3>\n
Medical Professional Resources<\/h2>\r\nThe ECDGA is pleased to share that the National Comprehensive Cancer Network\u00ae (NCCN\u00ae)\u2014an alliance of leading cancer centers\u2014has published a new NCCN Guidelines\u00ae for Histiocytosis. These clinical practice guidelines provide the latest evidence and expert consensus for diagnosing and treating the three most common forms of histiocytosis in adults: Langerhans cell histiocytosis (LCH), Erdheim-Chester Disease (ECD,) and Rosai-Dorfman Disease (RDD). The NCCN Guidelines can help patients, families, and physicians access the latest information about symptoms, diagnosis, treatment, and more. The guidelines can also serve as a useful tool when seeking approvals for coverage of drugs and therapies. The guidelines are updated at least once a year and can be accessed at any time. Access your copy below or on PubMed. \r\n
For ECD researchers:<\/h3>\r\nWe are the only private funder dedicated to ECD research.\r\n\r\nLearn more about our research funding opportunities<\/u><\/a>.\r\n\r\nLearn about scientific meetings the ECDGA will be hosting and attending<\/a>.<\/u>\r\n
Materials by Specialty:<\/h3>\r\n
\r\n \t