{"id":50530,"date":"2019-03-10T12:04:30","date_gmt":"2019-03-10T17:04:30","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/medische-bronnen\/"},"modified":"2026-03-24T09:37:42","modified_gmt":"2026-03-24T14:37:42","slug":"medische-bronnen","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/nl\/medische-bronnen\/","title":{"rendered":"Medische bronnen"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;15px||15px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/nl\/neem-contact-met-ons-op\/&#8221; button_text=&#8221;Neem contact met ons op&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||true|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>NCCN-richtlijnen  <\/h2>\n<p>De ECDGA is verheugd te kunnen melden dat het National Comprehensive Cancer Network\u00ae (NCCN\u00ae) &#8211; een samenwerkingsverband van vooraanstaande kankercentra &#8211; nieuwe NCCN-richtlijnen\u00ae voor histiocytose heeft gepubliceerd. Deze richtlijnen voor de klinische praktijk bieden het meest recente bewijs en de consensus van deskundigen voor het diagnosticeren en behandelen van de drie meest voorkomende vormen van histiocytose bij volwassenen: Langerhanscel histiocytose (LCH), Erdheim-Chester Disease (ECD,) en Rosai-Dorfman Disease (RDD). De NCCN-richtlijnen kunnen pati\u00ebnten, familieleden en artsen helpen om toegang te krijgen tot de meest recente informatie over symptomen, diagnose, behandeling en meer. De richtlijnen kunnen ook dienen als een nuttig hulpmiddel bij het aanvragen van goedkeuring voor geneesmiddelen en therapie\u00ebn. De richtlijnen worden minstens \u00e9\u00e9n keer per jaar bijgewerkt en kunnen op elk moment worden geraadpleegd. Bekijk uw exemplaar hieronder of op PubMed.[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.nccn.org\/guidelines\/guidelines-detail?category=1&amp;id=1502&#8243; url_new_window=&#8221;on&#8221; button_text=&#8221;NCCN-richtlijnen&#8221; button_alignment=&#8221;left&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>ECDGA Medische brochures<\/h2>\n<p>Medische ECD-experts in onze gemeenschap hebben geholpen bij het samenstellen van twee soorten brochures voor algemene educatie en bewustwordingsdoeleinden. De pati\u00ebntenbrochure is beschikbaar om nieuwe leden van de gemeenschap te helpen de basisprincipes van ECD te begrijpen.  De medische brochure is beschikbaar om te delen met uw behandelteam of een andere medische professional. Vraag een gratis exemplaar aan door dit formulier in te vullen.<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/nl\/brochure-aanvragen\/&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Brochure aanvragen&#8221; button_alignment=&#8221;left&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||9px||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_3,1_3,1_3&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;6px||14px||false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; sticky_enabled=&#8221;0&#8243;][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.27.4&#8243; 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locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/nl\/hulpmiddelen-voor-endocrinologie\/&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Hulpmiddelen voor endocrinologie&#8221; button_alignment=&#8221;center&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_4,1_4,1_4,1_4&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||2vw||false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; 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button_alignment=&#8221;center&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/Radiology-2024-ECD-Card-Final-11-13-24.pdf&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Radiologie&#8221; button_alignment=&#8221;center&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/03\/Dermatology-Medical-Brochure-2026.pdf&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Dermatologie&#8221; button_alignment=&#8221;center&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>ECD Proeven en studies<\/h2>\n<p>Actuele <a href=\"https:\/\/www.erdheim-chester.org\/nl\/onderzoeken-en-proeven\/\">ECD studies en onderzoeken<\/a> worden online vermeld om artsen en pati\u00ebnten te helpen.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>ECDGA Presentaties<\/h2>\n<p><a href=\"https:\/\/jnccn.org\/view\/journals\/jnccn\/19\/11\/article-p1312.xml\" target=\"_blank\" rel=\"noopener\">Overlevingsproblemen bij volwassen pati\u00ebnten met histiocytaire neoplasmen<\/a><\/p>\n<p>Deskundige richtlijnen voor ECD zorg en behandeling, geschreven in 2020, zijn hier te vinden: <a href=\"https:\/\/ashpublications.org\/blood\/article\/135\/22\/1929\/452713\/Erdheim-Chester-disease-consensus-recommendations\" target=\"_blank\" rel=\"noopener noreferrer\">Erdheim-Chester disease: consensus recommendations for evaluation, diagnosis, and treatment in the molecular era.<\/a><\/p>\n<p>Presentatiedia&#8217;s en <a href=\"https:\/\/www.youtube.com\/@ECDGA\/playlists\" target=\"_blank\" rel=\"noopener\">video&#8217;s<\/a> van experts over ECD en lopend onderzoek staan vermeld onder <a title=\"Wetenschappelijke bijeenkomst\" href=\"https:\/\/www.erdheim-chester.org\/nl\/wetenschappelijke-bijeenkomst\/\">Medisch Symposium<\/a> of ons <a href=\"https:\/\/www.youtube.com\/@ECDGA\/featured\" target=\"_blank\" rel=\"noopener\">YouTube-kanaal<\/a>.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||true|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Hulp bij beroepsprocedures<\/h2>\n<p>Medische zorgverleners die hulp nodig hebben bij het verkrijgen van goedkeuring voor de zorg en medicatie van een ECD pati\u00ebnt kunnen hier meer informatie vinden: <a href=\"https:\/\/www.erdheim-chester.org\/nl\/beroep-aantekenen-bij-de-betaler\/\">Beroep aantekenen bij de betaler.<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||true|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||16px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Gepeerderde overzichtsartikelen<\/h2>\n<p><a href=\"https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC9748923\/\" target=\"_blank\" rel=\"noopener noreferrer\">Caring for Your Patient with a Rare Disease (Zorgen voor uw pati\u00ebnt met een zeldzame ziekte<\/a> ) wordt aangeboden door de NIH om medisch personeel te helpen wanneer ze te maken krijgen met een geval van een zeldzame ziekte, inclusief tips voor ICD-codering.<\/p>\n<p><strong>Zoek artikelen over Erdheim-Chester ziekte online met behulp van PubMed.<\/strong> PubMed is een gratis zoekmachine die wordt gebruikt voor toegang tot referenties en samenvattingen over biowetenschappen en biomedische onderwerpen. De United States National Library of Medicine bij de National Institutes of Health beheert de database voor het ophalen van informatie. Sinds oktober 2021 zijn er op PubMed 1.034 artikelen die verwijzen naar \u201cErdheim Chester\u201d. <\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/pubmed.ncbi.nlm.nih.gov\/?term=erdheim+chester&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Pubmed&#8221; button_alignment=&#8221;left&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2vw||2vw||true|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Voor ECD onderzoekers:<\/h3>\n<p>Wij zijn de enige particuliere financier die zich richt op ECD onderzoek.<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/nl\/financiering-van-onderzoek\/\">Lees meer over onze financieringsmogelijkheden voor onderzoek<\/a>.<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/nl\/wetenschappelijke-bijeenkomst\/\">Kom meer te weten over wetenschappelijke bijeenkomsten die de ECDGA organiseert en bijwoont<\/a>.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>NCCN-richtlijnen De ECDGA is verheugd te kunnen melden dat het National Comprehensive Cancer Network\u00ae (NCCN\u00ae) &#8211; een samenwerkingsverband van vooraanstaande kankercentra &#8211; nieuwe NCCN-richtlijnen\u00ae voor histiocytose heeft gepubliceerd. 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