{"id":49784,"date":"2021-10-29T12:50:22","date_gmt":"2021-10-29T17:50:22","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/a-propos-de-nous\/"},"modified":"2025-09-27T11:50:56","modified_gmt":"2025-09-27T16:50:56","slug":"a-propos-de-nous","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/fr\/a-propos-de-nous\/","title":{"rendered":"A propos de nous"},"content":{"rendered":"

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Notre mission<\/h2>\n

L’Alliance mondiale ECD se consacre \u00e0 la sensibilisation, au soutien, \u00e0 l’\u00e9ducation et \u00e0 la recherche dans les domaines suivants Erdheim-Chester la maladie. L’organisation travaille avec la communaut\u00e9 mondiale pour accomplir ce qui suit : <\/p>\n

Sensibilisez les gens \u00e0 ECD.<\/strong> Nous nous effor\u00e7ons de faciliter le diagnostic pr\u00e9coce de la maladie et de stimuler l’int\u00e9r\u00eat et les efforts pour am\u00e9liorer les connaissances sur la maladie et les traitements.<\/p>\n

Apporter un soutien aux personnes touch\u00e9es par la maladie.<\/strong> Nous continuerons \u00e0 rechercher tous les moyens d’all\u00e9ger autant que possible le fardeau des personnes touch\u00e9es par la maladie ECD. L’information, l’orientation et le contact individuel avec d’autres personnes touch\u00e9es par la maladie ne sont que quelques-uns des soutiens offerts par l’interm\u00e9diaire de ECDGA. <\/p>\n

D\u00e9fendre et soutenir les programmes de recherche.<\/strong> L’objectif de ces programmes de recherche est d’en apprendre davantage sur (a) la maladie, (b) les traitements efficaces de la maladie, (c) les rem\u00e8des possibles, et\/ou (d) les moyens de pr\u00e9venir compl\u00e8tement la maladie. L’alliance comprendra, entre autres, une collaboration avec le personnel m\u00e9dical, le personnel de recherche et d’autres organismes de sant\u00e9 pour aider \u00e0 d\u00e9finir les domaines dans lesquels la recherche est n\u00e9cessaire, pour financer la recherche et pour aider \u00e0 promouvoir les avantages de la recherche sur le site ECD aupr\u00e8s d’autres organismes de sant\u00e9. L’alliance servira \u00e9galement d’interm\u00e9diaire pour transf\u00e9rer les informations n\u00e9cessaires de ses membres \u00e0 la communaut\u00e9 des chercheurs, conform\u00e9ment \u00e0 des lignes directrices document\u00e9es. <\/p>\n

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Kathy Brewer, fondatrice et pr\u00e9sidente<\/p>\n

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Partager du mat\u00e9riel \u00e9ducatif et faciliter l’\u00e9change d’informations entre les parties int\u00e9ress\u00e9es concernant ECD.<\/strong> Il s’agit notamment de fournir des informations actuelles, fiables et factuelles sur le site ECD aux patients, \u00e0 leurs proches, au personnel m\u00e9dical, au personnel de recherche, aux m\u00e9dias et \u00e0 d’autres organisations. Il s’agira \u00e9galement de promouvoir, de parrainer et d’organiser des ateliers, des symposiums et d’autres r\u00e9unions afin de promouvoir les objectifs de l’alliance. <\/p>\n

Une d\u00e9cennie d’impact<\/h3>\n

Pour la plupart des gens, l’exp\u00e9rience de la maladie commence par une recherche frustrante et effrayante de r\u00e9ponses. Erdheim-Chester maladie commence par une recherche frustrante et effrayante de r\u00e9ponses.<\/p>\n

Ce fut certainement le cas pour la fondatrice de ECD Global Alliance, Kathy Brewer, et son d\u00e9funt mari, Gary. Au moment de sa mort, Gary \u00e9tait malade depuis 20 ans et tr\u00e8s malade depuis trois ans. Il pr\u00e9sentait des sympt\u00f4mes de maladie r\u00e9nale et avait d’ailleurs subi une greffe de rein. Mais ce n’est qu’\u00e0 l’autopsie que Kathy a appris que la maladie de Gary \u00e9tait la v\u00e9ritable cause de son d\u00e9c\u00e8s. Erdheim-Chester la v\u00e9ritable cause de son d\u00e9c\u00e8s. <\/p>\n

C’est le d\u00e9fi que pose une maladie tr\u00e8s rare. Lorsqu’une maladie ne touche qu’environ 1 000 personnes dans le monde, peu de m\u00e9decins ont la familiarit\u00e9 n\u00e9cessaire pour la diagnostiquer, en particulier lorsqu’elle peut se manifester par des sympt\u00f4mes allant de douleurs osseuses et d’une perte de poids \u00e0 des probl\u00e8mes de vision et d’\u00e9quilibre. (Parmi les nombreux syst\u00e8mes de l’organisme, ECD peut affecter l’hypophyse et les glandes surr\u00e9nales, les poumons, la membrane entourant le c\u0153ur, les reins et le cerveau). <\/p>\n

Cependant, l’histoire de ECD est remarquablement diff\u00e9rente aujourd’hui de ce qu’elle \u00e9tait en 2008, et la raison en est l’Alliance mondiale ECD. Lanc\u00e9e par des soignants qui se sont trouv\u00e9s gr\u00e2ce \u00e0 l’internet, l’Alliance est pass\u00e9e de six familles \u00e0 pr\u00e8s de 800, ce qui a radicalement chang\u00e9 les perspectives pour les patients du site ECD. <\/p>\n

Aujourd’hui, la plupart des patients du site ECD peuvent contr\u00f4ler la progression de la maladie gr\u00e2ce \u00e0 l’un des nombreux traitements actuellement utilis\u00e9s. Nombreux sont ceux qui sont pass\u00e9s d’une esp\u00e9rance de vie typique de 3 \u00e0 5 ans \u00e0 une gestion des sympt\u00f4mes qui leur permet de continuer \u00e0 vivre. <\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/10\/ECD-Hope-cover.png\u00a0\u00bb title_text=\u00a0\u00bbECD Couverture de l'espoir\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_blurb title=\u00a0\u00bbNotre espoir pour l'avenir\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb image_icon_width=\u00a0\u00bb60px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb link_option_url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

D\u00e9couvrez le plan strat\u00e9gique quinquennal actuellement mis en \u0153uvre par votre groupe de pression.<\/p>\n

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L’Alliance mondiale ECD a cr\u00e9\u00e9 une communaut\u00e9 bas\u00e9e sur la collaboration et les partenariats entre les patients, les membres des familles, les amis, les donateurs, les professionnels de la sant\u00e9 et les chercheurs. En tant que communaut\u00e9, la chronologie suivante donne un aper\u00e7u de certaines des r\u00e9alisations qui en ont r\u00e9sult\u00e9. <\/p>\n

[\/et_pb_text][et_pb_image src=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/ECD-Timeline-img.jpg\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_text=\u00a0\u00bbCalendrier ECD img\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ sticky_enabled=\u00a0\u00bb0″ align=\u00a0\u00bbcenter\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#F2F2F2″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ make_equal=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_width_bottom=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#f1f1f1″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_blurb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||fa||900″ icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb image_icon_width=\u00a0\u00bb60px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb body_text_align=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

L’Alliance a mis en place un r\u00e9seau de centres de soins dans des \u00e9tablissements m\u00e9dicaux de premier plan au niveau international, chacun disposant d’une \u00e9quipe de sp\u00e9cialistes pr\u00e9par\u00e9s \u00e0 diagnostiquer et \u00e0 traiter ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#35A4BB\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb background_layout=\u00a0\u00bbdark\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

\u00ab\u00a0Avant ECDGA<\/strong>, il n’y avait pas de lieu central pour traiter la maladie ou obtenir des informations, pas d’organisation. Vous rencontriez un m\u00e9decin qui vous proposait de vous soigner et vous d\u00e9couvriez qu’il n’avait jamais trait\u00e9 un seul patient de ECD.\u00a0\u00bb – aidant d’un patient ECD <\/em><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ make_equal=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_width_bottom=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#f1f1f1″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#35A4BB\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb background_layout=\u00a0\u00bbdark\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]\u00a0\u00bbIl y a tellement de choses qui ont \u00e9t\u00e9 accomplies<\/strong> au cours de la derni\u00e8re d\u00e9cennie d’un point de vue scientifique et humain, et tr\u00e8s peu d’entre elles ne portent pas l’empreinte de l’Alliance. – ECD chercheur<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_blurb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb image_icon_width=\u00a0\u00bb60px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb body_text_align=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Elle a cr\u00e9\u00e9 un r\u00e9seau de soutien pour les familles et a r\u00e9uni les membres de la communaut\u00e9 internationale ECD pour une s\u00e9rie de conf\u00e9rences annuelles – une occasion pour les patients de se rencontrer et de parler avec des m\u00e9decins sp\u00e9cialis\u00e9s dans ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ make_equal=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_width_bottom=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#f1f1f1″ locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_blurb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb image_icon_width=\u00a0\u00bb60px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb body_text_align=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Elle a lanc\u00e9 un registre de patients pour constituer des archives de donn\u00e9es sur ECD et s’est associ\u00e9e aux NIH pour recruter des patients dans le cadre d’une \u00e9tude de l’histoire naturelle, essentielle pour comprendre la progression de la maladie.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#35A4BB\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb background_layout=\u00a0\u00bbdark\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]\u00a0\u00bbL’Alliance mondiale est exemplaire – elle<\/strong>d\u00e9fendvraiment<\/strong>, vraiment, les int\u00e9r\u00eats des m\u00e9decins, les aide \u00e0 sortir de leurs silos et \u00e0 se connecter. – ECD M\u00e9decin du centre de soins[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ make_equal=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_width_bottom=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#f1f1f1″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#35A4BB\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb background_layout=\u00a0\u00bbdark\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]\u00a0\u00bbCette organisation est un v\u00e9ritable cadeau. Des gens qui s’investissent pour faire progresser les soins aux personnes atteintes de ECD. Je n’ai jamais connu un d\u00e9vouement aussi sinc\u00e8re.\u00a0\u00bb – ECD patient<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ module_class=\u00a0\u00bbds-vertical-align\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb40px|40px|40px|40px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset1″ box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.1)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_blurb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||fa||900″ icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb image_icon_width=\u00a0\u00bb60px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb body_text_align=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Et, fait le plus marquant, elle a contribu\u00e9 \u00e0 rendre possible les travaux de th\u00e9rapie g\u00e9nique qui ont conduit \u00e0 l’approbation par la FDA d’un m\u00e9dicament efficace dans le traitement de ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||17px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Plus de r\u00e9alisations<\/h3>\n\n\n\n\n\t\n\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Year<\/th>Accomplishment<\/th>Details<\/th>\n<\/tr>\n<\/thead>\n
2025<\/td>10th Annual ECD Conference held in Barcelona, Spain, in partnership with Hospital Universitari de Bellvitge<\/td>Patients, family members, clinicians, and scientists met together to share knowledge and experiences. Attendees from over 20 countries shared information with the help of real-time human interpreters, supporting five different languages. The conference was co-hosted by Dr. Xavier Solanich.<\/td>\n<\/tr>\n
<\/td>Rheumatology Conference ECD Awareness Exhibit Planned<\/td>The ECDGA will attend the American College of Rheumatology (ACR) conference in Chicago, October 24-29, 2025.<\/td>\n<\/tr>\n
<\/td>Monthly Webinars<\/td>Monthly webinars are held to share information to ease the burden of living with ECD.<\/td>\n<\/tr>\n
<\/td>Updated ECDGA Website<\/td>A more modern website was released by the ECDGA that fully supports 11 languages.<\/td>\n<\/tr>\n
2024<\/td>9th Annual Conference held in Seattle, WA, USA, in partnership with the University of Washington and Fred Hutch Cancer Center<\/td>The Seattle conference was attended by 68 patients and family members and 42 medical professionals from around the world. The conference was co-hosted by Dr. Paul Hendrie.<\/td>\n<\/tr>\n
<\/td>Endocrinology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted a booth at the Endocrinology conference, ENDO 2024, in Boston, Massachusetts, June 1-4, 2024.<\/td>\n<\/tr>\n
<\/td>Ophthalmology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the American Academy of Ophthalmology (AAO) in Chicago, Illinois, from October 18-21, 2024.<\/td>\n<\/tr>\n
<\/td>Radiology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the Radiological Society of North America (RSNA) conference in Chicago, Illinois, from December 1-4, 2024.<\/td>\n<\/tr>\n
<\/td>Pathology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the United States and Canadian Academy of Pathology (USCAP) in Baltimore, Maryland, from March 25-27, 2024.<\/td>\n<\/tr>\n
<\/td>Virtual Chats<\/td>The number of virtual chats offered to the community has been expanded to include three general English chats: one for patients, one for caregivers, and one for those grieving a loss due to ECD. In addition, six other location- and\/or language-specific chats are also offered.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant awarded to Francesco Peyronel, MD, at Meyer Children\u2019s University Hospital in Firenze, Italy.<\/td>Dr. Peyronel was awarded the grant to study \u201cA New Comprehensive Approach to Predict Long-Term Prognosis in Erdheim-Chester Disease: From Cluster Analysis to Patient-Reported Outcomes\u201d.<\/td>\n<\/tr>\n
2023<\/td>8th Annual ECD Conference held in Rochester, Minnesota, in partnership with Mayo Clinic<\/td>The ECD conference was attended by 59 patients and family members and 41 medical professionals from around the world. The conference was co-hosted by Dr. Ronald Go and Dr. Gaurav Goyal.<\/td>\n<\/tr>\n
<\/td>Neuro-oncology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the Society of Neuro-Oncology (SNO) conference in Vancouver, British Columbia, from November 15 \u2013 19, 2023.<\/td>\n<\/tr>\n
<\/td>$200,000 grant awarded in partnership with the Leukemia and Lymphoma Society (LLS) to Matthew Collin, MD, PhD at Newcastle University in the UK.<\/td>Dr. Collin was awarded the grant to study \u201cInferring the origin of Erdheim-Chester Disease from Phylogenetic\u201d.<\/td>\n<\/tr>\n
<\/td>$200,000 grant awarded in partnership with the Leukemia and Lymphoma Society (LLS) to Gaurav Goyal, MD, at the University of Alabama at Birmingham in Alabama, AL<\/td>Dr. Goyal was awarded the grant to study \u201cA Multi-Center, Multi-National Investigation of Survivorship and Patient-Reported Symptoms in Erdheim-Chester Disease\u201d.<\/td>\n<\/tr>\n
<\/td>$50,000 grant awarded to Egle Kvedaraite, MD at Karolinska Institutet in Stockholm, Sweden.<\/td>Dr. Kvedaraite was awarded the grant to study \u201cSpatial understanding of Erdheim-Chester disease origin and lesional microenvironment for future precision medicine.\u201d<\/td>\n<\/tr>\n
<\/td>$20,000 Grant Awarded to Jithma Abeykoon, MD at the Mayo Clinic in Rochester, MN, USA.<\/td>Dr. Abeykoon was awarded the grant in partnership with Uplifting Athletes to study \u201cPrognostic and Therapeutic Significance of Chromosome Region Maintenance 1 (CRM1) Protein in Erdheim-Chester Disease\u201d.<\/td>\n<\/tr>\n
2022<\/td>Three Regional ECD meetings held <\/td>Meetings were held in Birmingham, AL; Cincinnati, OH, and San Diego, CA, all in the USA, as the COVID pandemic was being brought under control. The meetings were held by patients, family members, and medical professionals.<\/td>\n<\/tr>\n
<\/td>2nd FDA-Approved Drug: Cobimetinib (Cottelic)<\/td>A Memorial Sloan Kettering Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible.<\/td>\n<\/tr>\n
<\/td>Hematology Conference ECD Awareness Exhibit<\/td>The ECDGA returned to the American Society of Hematology (ASH) meeting to host an awareness booth and interact with hematologists from around the world to help raise awareness with clinicians who would be likely to diagnose ECD early in the progression of the disease, when treatments are more likely to be most effective.<\/td>\n<\/tr>\n
<\/td>$50,000 Grant Awarded to Francesco Pegararo, MD at Meyer Chidren\u2019s University Hospital in Firenze, Italy in Firenze, Italy<\/td>Dr. Pegoraro was awarded the grant to study \u201cExploring the genetic landscape of Erdheim-Chester disease by integrating GWAS and -omic data.\u201d<\/td>\n<\/tr>\n
<\/td>$20,000 Grant Awarded to Gaurav Goyal, MD at the University of Alabama at Birmingham in Alabama, USA<\/td>Dr. Goyal was awarded the grant in partnership with Uplifting Athletes to study \u201cBurden of morbidity and premature mortality in patients with Erdheim-Chester disease.\u201d<\/td>\n<\/tr>\n
2021<\/td>Webinars<\/a>, Chats, and Strategy continue<\/td>The organization continues to support patients, families, and physicians with meaningful connections as much as possible during the COVID pandemic. All while implementing our 5-Year Strategy of growth and improvement.<\/td>\n<\/tr>\n
<\/td>NCCN Guidelines<\/td>The National Comprehensive Cancer Network (NCCN) Guidelines\u00ae for Histiocytosis were published, as discussed and planned through the ECD Care Center Referral Network meetings managed through the ECDGA leadership.<\/td>\n<\/tr>\n
<\/td>Virtual Medical Symposium<\/td>With a pandemic that no one expected or hoped for, the annual events<\/a> were canceled for 2020. This year, we pulled together our top physicians and researchers to create an online conference, continuing the collaboration and growth in the medical field without delay.<\/td>\n<\/tr>\n
2020<\/td>Community Webinars<\/a><\/td>The COVID pandemic led to the ECDGA providing Educational webinars<\/a> hosted by our expert medical member. These replaced the in-person conference normally held annually for the ECD community. This involved partnerships with other histiocytosis advocacy groups. These partnerships have strengthened and streamlined this project, benefiting all involved.<\/td>\n<\/tr>\n
<\/td>High-Level Strategy Planning<\/td>The ECD Global Alliance is a small but extremely effective organization leading the fight against the disease. Beginning in 2008, the organization has helped achieve major advances in treatment and offered invaluable support to patients and caregivers. As a result, the Alliance has helped change the meaning of an ECD diagnosis<\/a>. Organization leaders met to set a direction to continue the track record of community accomplishments.<\/td>\n<\/tr>\n
2019<\/td>7th Annual ECD Conference held in Milan, Italy, in partnership with San Raffaele Scientific Institute<\/td>The purpose of the medical symposium is to unite international medical professionals in discussion and education of studies, experiences, and knowledge regarding Erdheim-Chester Disease. In this space, medical professionals are encouraged to present findings and knowledge to audience members. During the patient meeting, patients and family members are encouraged to ask questions, reach out, and learn about the ultra-rare disease that affects their lives. This meeting was co-hosted with Prof. Lorenzo Dagna.<\/td>\n<\/tr>\n
<\/td>Endocrinology Conference ECD Awareness Exhibit<\/td>The purpose of the ECD Global Alliance exhibit at the endocrinology conference, ENDO 2019, was to generate awareness of Erdheim-Chester Disease, communicate the recent research landscape and new treatment opportunities for patients, and facilitate the growth of the ECD Global Alliance medical professional network among interested physicians and scientists. In addition, connect with other exhibitors offering services that can help the ECDGA raise further awareness and education of ECD.<\/td>\n<\/tr>\n
<\/td>Second Consensus Article Published<\/td>As a result of the ECD Medical Symposia in previous years, the second-ever comprehensive guidelines were published by leading ECD experts. This important document was a collaborative collection of data gleaned from extensive research on the disease and the treatment of patients worldwide.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant awarded to Dr. Nicole Coufal at UCSD<\/td>Dr. Coufal was awarded a grant to study \u201cPathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis.\u201d<\/td>\n<\/tr>\n
<\/td>Chat Program<\/td>The infamous COVID pandemic pushed the ECDGA to find creative ways to engage the community. With online meetings becoming normal, the Alliance began hosting chats for various audiences. This includes patients, friends, family, caregivers, physicians, and regional and international language meetings.<\/td>\n<\/tr>\n
2018<\/td>6th Annual ECD Conference held in Orlando, FL in partnership with Orlando Health<\/td>A total of 109 members from eight countries attended to learn about the drug trial process, how to<\/a> manage multiple medications, how to<\/a> care for yourself with nutrition and exercise, and about care management. This conference was co-hosted by Dr. Julio Hajdenberg.<\/td>\n<\/tr>\n
<\/td>Hematology Conference ECD Awareness Exhibit<\/td>Hematologists from around the world eagerly engage with ECDGA exhibitors at the American Society of Hematologists (ASH) to learn more about Erdheim-Chester Disease.<\/td>\n<\/tr>\n
<\/td>Grand Round Medical Presentations<\/td>ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist.<\/td>\n<\/tr>\n
2017<\/td>1st FDA-Approved Drug: Vemurafenib (Zelboraf)<\/td>The Memorial Sloan Kettering Basket Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible.<\/td>\n<\/tr>\n
<\/td>5th Annual ECD Conference held in New York in partnership with Columbia University and Memorial Sloan Kettering Cancer Center<\/td>Patients, family members, nurses, research teams, and numerous physicians attended the 2017 Patient & Family Gathering and Medical Symposium held in New York. Attendees were brought up to date on the latest research, treatments<\/a>, and care management techniques, including the psychological effects of living with ECD. This meeting was co-hosted with Dr. Mark Heaney and Dr. Eli L. Diamond.<\/td>\n<\/tr>\n
<\/td>Care Centers<\/a> Added to Network<\/td>Locations in Israel, China, Nashville, Canada, and Australia were welcomed to the network.<\/td>\n<\/tr>\n
<\/td>Grand Round Medical Presentations<\/td>ECD-knowledgeable physicians were sponsored by the ECDGA to give educational talks at universities in Houston, TX, New Orleans, and Shreveport, LA.<\/td>\n<\/tr>\n
<\/td>Pathology Conference ECD Awareness Exhibit<\/td>The ECDGA medical community volunteered to create materials to educate attendees at an annual pathology conference. The ECDGA team hosted an exhibit booth, where they introduced and discussed ECD at length with pathologists around the world.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research Grant Awarded to Dr. Benjamin Durham at MSK<\/td>Dr. Durham was awarded a grant to study \u201cDefining the Cell-of-Origin of Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
2016<\/td>4th Annual ECD Conference held in Paris, France, in partnership with H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re<\/td>The first European conference, held in Paris, France, included 63 attendees from 17 different countries who heard from 16 physicians about ECD<\/a> organ involvement, the use of scans to monitor the disease and its treatments<\/a>, techniques to manage pain, and the latest research findings, including treatment options. The first European ECD Medical Symposium was held in Paris, France, at Ho\u0302pital Piti\u00e9-Salp\u00eatri\u00e8re, where over 50 physicians gathered to collaborate and share data on ECD. This meeting was co-hosted with Prof. Julien Haroche.<\/td>\n<\/tr>\n
<\/td>$43,000 ECD research grant was awarded to Dr. Eli Diamond at Memorial Sloan Kettering<\/td>Dr. Eli L. Diamond was awarded a grant to study \u201cA Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant was awarded to Dr. Filip Janku at MD Anderson and Dr. Omar Abdel-Wahab at Memorial Sloan Kettering<\/td>Drs. Janku and Abdel-Wahab were awarded a grant to study \u201cUnderstanding and Targeting Novel Molecular Alterations in Erdheim-Chester disease Without the BRAFV600E Mutation.\u201d<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant was awarded to Dr. Marina Ferrarini and Dr. Lorenzo Dagna at San Raffaele Scientific Institute<\/td>Drs. Ferrarini and Dagna were awarded a grant to study \u201cTailoring Treatments for Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
<\/td>10 Languages Added to Website<\/td>Volunteers from around the globe dedicated their time and talents to translating important content into ten languages for the ECDGA website.<\/td>\n<\/tr>\n
2015<\/td>3rd Annual ECD Conference held in Houston, Texas, in partnership with MD Anderson Cancer Center<\/td>Patients, families, and physicians united in Houston, TX, for a memorable two-day gathering. The medical symposium was co-hosted at MD Anderson Cancer Center, with Dr. Filip Janku.<\/td>\n<\/tr>\n
<\/td>Development of ECD Referral Care Center Network<\/td>Care centers<\/a> with ECD-knowledgeable medical teams began to form a network to support patients with care and consultation around the world. To date, the ECDGA collaborates with 35 ECD Care Centers <\/a>serving patients.<\/td>\n<\/tr>\n
<\/td>New Website<\/td>An updated website was developed to engage members on all devices.<\/td>\n<\/tr>\n
<\/td>$313,000 Grant was awarded to Dr. Eli L. Diamond at Memorial Sloan Kettering and Pr. Matthew Collin at Newcastle University<\/td>Drs. Eli L. Diamond and Matthew Collin were awarded for the development of the ECD Patient Registry. This allowed patients and physicians the opportunity to collaborate and lead research more effectively so that treatment and care can continue to improve and evolve.<\/td>\n<\/tr>\n
2014<\/td>2nd ECD Conference held in Bethesda, Maryland, in partnership with the National Institutes of Health<\/td>Patients and family members gather in Bethesda, MD, for a two-day meeting including ECD presentations delivered by the experts. Physicians and researchers presented their work and discussed the state of Erdheim-Chester disease care for patients around the world. This conference was co-hosted by Dr. Juvi Estrada-Veras.<\/td>\n<\/tr>\n
<\/td>Consensus guidelines for ECD treatment are published<\/td>The \u201cConsensus guidelines for the diagnosis and clinical management of Erdheim-Chester Disease\u201d are published in the journal, Blood.<\/td>\n<\/tr>\n
2013<\/td>1st ECD International Conference held in San Diego, California<\/td>In addition to the patient meeting, the first international meeting was held this year, inviting doctors to present ECD research, case studies, and treatments<\/a>. This meeting was also the catalyst for collaboration in developing the significant 2014 Blood Journal ECD Consensus document. Collaborative annual conferences have continued to take place around the world each year.<\/td>\n<\/tr>\n
<\/td>ECD Documentary Film<\/td>A patient documentary film was developed and produced to support outreach and education of Erdheim-Chester disease.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD Research Grant Awarded to Drs. Omar Abdel-Wahab, David Hyman, and Eli Diamond at Memorial Sloan Kettering Cancer Center<\/td>$50,000 was awarded to Drs. Abdel-Wahab, Diamond, and Hyman at Memorial Sloan-Kettering Cancer Center (MSK). \u201cSomatic Genetic Alterations in the Pathogenesis and Therapy of Histiocytic Disorders\u201d<\/td>\n<\/tr>\n
2012<\/td>$47,000 ECD Research Grant Awarded to Dr. Julien Haroche and Dr. Laurent Arnaud at H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re<\/td>Drs. Haroche and Arnaud were awarded a grant to study \u201cUnderstanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis<\/a>\u201d<\/td>\n<\/tr>\n
<\/td>1st ECD Medical Meeting<\/td>A meeting was held in Houston, TX, attended by investigators from various institutions in the US.<\/td>\n<\/tr>\n
2011<\/td>$50,000 ECD Research Grant Awarded to Dr. Lorenzo Dagna at San Raffaele Scientific Institute<\/td>Dr. Dagna was awarded a grant to study \u201cHypoxia and inflammation in Erdheim-Chester disease microenvironment: Insights on the pathogenesis and implications for therapy\u201d. <\/td>\n<\/tr>\n
<\/td>ECD Natural History Study<\/td>The National Institute of Health (NIH) played a pivotal role in ECD research and in pursuing new treatments that educate the medical community about ECD<\/a>. NIH clinical director, William Gahl, M.D., Ph.D., and principal investigator, Juvianee Estrada-Veras, M.D., along with Kevin O\u2019Brien, conducted a natural history study on the disease. The study began in 2011, and this led to a treatment trial in 2014. Multiple medical journals have been published with the data collected from this thorough study of ~60 patients.<\/td>\n<\/tr>\n
2010<\/td>501(c)3 Tax Exemption Granted<\/td>ECDGA was granted federal tax exemption status following the formation of the Board of Directors and Medical Advisory Board<\/a>.<\/td>\n<\/tr>\n
<\/td>First multi-center study <\/td>The ECDGA is <\/td>\n<\/tr>\n
2009<\/td>Treatment protocols begin to be published<\/td>The ECDGA is able to share studies and treatment protocols to community members based as documented in peer-reviewed publications<\/td>\n<\/tr>\n
<\/td>ECDGA forms leadership boards<\/td>The ECDGA Board of Directors and Medical Advisory Board are formed.<\/td>\n<\/tr>\n
2008<\/td>ECD Caregivers Meet<\/td>In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet.<\/td>\n<\/tr>\n
<\/td>First Chat Session Held<\/td>With a spirit of \u201cIf you build it, they will come,\u201d an online chat session was scheduled for all those affected by ECD. We started with a group representing only six patients.<\/td>\n<\/tr>\n
<\/td>ECD Website Published<\/td>A website was created with the hope that it would provide much-needed information to families in search of answers for this rare illness.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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