{"id":49758,"date":"2021-10-29T12:50:22","date_gmt":"2021-10-29T17:50:22","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/om-oss\/"},"modified":"2025-09-27T11:50:50","modified_gmt":"2025-09-27T16:50:50","slug":"om-oss","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/no\/om-oss\/","title":{"rendered":"Om oss"},"content":{"rendered":"

[et_pb_section fb_built=»1″ _builder_version=»4.27.4″ _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=»0px||0px||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_dmb_breadcrumbs _builder_version=»4.27.4″ _module_preset=»default» body_text_color=»#FFFFFF» body_font_size=»12px» link_text_color=»#35A4BB» custom_margin=»||5px||false|false» custom_padding=»||0px||false|false» body_font_size_tablet=»12px» body_font_size_phone=»10px» body_font_size_last_edited=»on|desktop» global_colors_info=»{}»][\/et_pb_dmb_breadcrumbs][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=»https:\/\/www.erdheim-chester.org\/no\/kontakt-oss\/» button_text=»Kontakt oss» _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″ admin_label=»section» _builder_version=»4.27.4″ hover_enabled=»0″ global_colors_info=»{}» custom_padding=»||0px||false|false» sticky_enabled=»0″][et_pb_row column_structure=»2_3,1_3″ _builder_version=»4.27.4″ _module_preset=»default» global_colors_info=»{}»][et_pb_column type=»2_3″ _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

V\u00e5rt oppdrag<\/h2>\n

ECD Global Alliance er dedikert til bevisstgj\u00f8ring, st\u00f8tte, utdanning og forskning knyttet til Erdheim-Chester sykdom. Organisasjonen samarbeider med det globale samfunnet for \u00e5 oppn\u00e5 f\u00f8lgende <\/p>\n

\u00d8ke bevisstheten om ECD.<\/strong> Vi arbeider for \u00e5 legge til rette for tidlig diagnostisering av sykdommen og for \u00e5 stimulere til engasjement og innsats for \u00e5 \u00f8ke kunnskapen om sykdommen og behandlingene.<\/p>\n

Gi st\u00f8tte til dem som er rammet av sykdommen.<\/strong> Vi vil fortsette \u00e5 forf\u00f8lge alle muligheter for \u00e5 lette byrden s\u00e5 mye som mulig for dem som er rammet av ECD. Informasjon, henvisninger og personlig kontakt med andre som er ber\u00f8rt av sykdommen, er bare noen av de hjelpetiltakene som tilbys gjennom ECDGA. <\/p>\n

Arbeide for og st\u00f8tte forskningsprogrammer.<\/strong> Form\u00e5let med slike forskningsprogrammer er \u00e5 l\u00e6re mer om (a) sykdommen, (b) effektive behandlinger for sykdommen, (c) mulige kurer og\/eller (d) m\u00e5ter \u00e5 forebygge sykdommen p\u00e5. Dette vil inkludere, men ikke n\u00f8dvendigvis v\u00e6re begrenset til, samarbeid med medisinsk personell, forskningspersonell og andre helseorganisasjoner for \u00e5 bidra til \u00e5 definere omr\u00e5der der det er behov for forskning, for \u00e5 finansiere forskning og for \u00e5 bidra til \u00e5 fremme fordelene ved ECD forskning overfor andre helseinstanser. Alliansen vil ogs\u00e5 fungere som en kanal for \u00e5 overf\u00f8re n\u00f8dvendig informasjon fra medlemmene til forskningsmilj\u00f8et i henhold til dokumenterte retningslinjer. <\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=»1_3″ _builder_version=»4.27.4″ _module_preset=»default» global_colors_info=»{}»][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2019\/04\/kathy.jpg» title_text=»kathy» _builder_version=»4.27.4″ _module_preset=»default» custom_margin=»||10px||false|false» custom_padding=»||||false|false» global_colors_info=»{}»][\/et_pb_image][et_pb_text _builder_version=»4.27.4″ _module_preset=»default» text_orientation=»center» global_colors_info=»{}»]<\/p>\n

Kathy Brewer, grunnlegger og president<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»2_3,1_3″ _builder_version=»4.27.4″ _module_preset=»default» custom_padding=»0px||||false|false» global_colors_info=»{}»][et_pb_column type=»2_3″ _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

Del oppl\u00e6ringsmateriell og legg til rette for informasjonsutveksling mellom interesserte parter om ECD.<\/strong> Dette inneb\u00e6rer blant annet \u00e5 gi aktuell, p\u00e5litelig og faktabasert informasjon om ECD til pasienter, p\u00e5r\u00f8rende, medisinsk personell, forskningspersonell, media og andre organisasjoner. Det vil ogs\u00e5 omfatte promotering, sponsing og gjennomf\u00f8ring av workshops, symposier og andre m\u00f8ter for \u00e5 fremme alliansens m\u00e5l. <\/p>\n

Et ti\u00e5r med innflytelse<\/h3>\n

For de fleste begynner en sykdomserfaring Erdheim-Chester sykdom med en frustrerende og skremmende s\u00f8ken etter svar.<\/p>\n

Dette gjaldt i h\u00f8yeste grad for ECD Global Alliance-grunnleggeren Kathy Brewer og hennes avd\u00f8de ektemann Gary. Da Gary d\u00f8de, hadde han v\u00e6rt syk i 20 \u00e5r, og sv\u00e6rt syk i tre \u00e5r. Han hadde symptomer p\u00e5 nyresykdom, og gjennomgikk faktisk en nyretransplantasjon. Men det var ikke f\u00f8r obduksjonen at Kathy fikk vite Erdheim-Chester var den egentlige \u00e5rsaken. <\/p>\n

Dette er utfordringen med en sv\u00e6rt sjelden sykdom. N\u00e5r en tilstand bare rammer anslagsvis 1000 mennesker p\u00e5 verdensbasis, er det f\u00e5 leger som har den n\u00f8dvendige kunnskapen som kreves for \u00e5 diagnostisere den, s\u00e6rlig n\u00e5r den kan manifestere seg med symptomer som spenner fra bensmerter og vekttap til problemer med syn og balanse. (Blant mange kroppssystemer kan ECD p\u00e5virke hypofysen og binyrene, lungene, membranen rundt hjertet, nyrene og hjernen). <\/p>\n

Historien om ECD er imidlertid bemerkelsesverdig annerledes i dag enn den var i 2008, og grunnen til det er ECD Global Alliance. Alliansen ble startet av p\u00e5r\u00f8rende som fant hverandre via Internett, og har vokst fra seks familier til nesten 800, noe som har endret fremtidsutsiktene for ECD -pasienter dramatisk. <\/p>\n

I dag kan de fleste ECD pasienter kontrollere sykdomsutviklingen med en av de mange behandlingene som n\u00e5 er i bruk. Mange har g\u00e5tt fra \u00e5 ha en forventet levealder p\u00e5 3-5 \u00e5r til \u00e5 kunne h\u00e5ndtere symptomene mens de lever videre. <\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=»1_3″ _builder_version=»4.27.4″ _module_preset=»default» global_colors_info=»{}»][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/10\/ECD-Hope-cover.png» title_text=»ECD H\u00e5p-cover» url=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf» url_new_window=»on» _builder_version=»4.27.4″ _module_preset=»default» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][\/et_pb_image][et_pb_blurb title=»V\u00e5rt h\u00e5p for fremtiden» url=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf» url_new_window=»on» image_icon_width=»60px» _builder_version=»4.27.4″ _module_preset=»default» link_option_url=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf» link_option_url_new_window=»on» global_colors_info=»{}»]<\/p>\n

Les om den fem\u00e5rige strategiplanen som for tiden implementeres av interesseorganisasjonen din.<\/p>\n

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ECD Global Alliance har skapt et fellesskap basert p\u00e5 samarbeid og partnerskap mellom pasienter, familiemedlemmer, venner, givere, medisinsk fagpersonell og forskere. F\u00f8lgende tidslinje gir en oversikt over noen av de resultatene som har blitt oppn\u00e5dd som et resultat av dette fellesskapet. <\/p>\n

[\/et_pb_text][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/ECD-Timeline-img.jpg» _builder_version=»4.27.4″ _module_preset=»default» title_text=»ECD Tidslinje img» hover_enabled=»0″ sticky_enabled=»0″ align=»center»][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=»1″ _builder_version=»4.27.4″ _module_preset=»default» background_color=»#F2F2F2″ global_colors_info=»{}»][et_pb_row column_structure=»1_2,1_2″ make_equal=»on» _builder_version=»4.27.4″ _module_preset=»default» border_width_bottom=»1px» border_color_bottom=»#f1f1f1″ global_colors_info=»{}»][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#FFFFFF» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_blurb use_icon=»on» font_icon=»||fa||900″ icon_color=»#35A4BB» image_icon_width=»60px» _builder_version=»4.27.4″ _module_preset=»default» body_text_align=»center» global_colors_info=»{}»]<\/p>\n

Alliansen har etablert et nettverk av omsorgssentre ved ledende medisinske institusjoner internasjonalt, hvert senter har et team av spesialister som er forberedt p\u00e5 \u00e5 diagnostisere og behandle ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#35A4BB» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.4″ _module_preset=»default» text_orientation=»center» background_layout=»dark» global_colors_info=»{}»]<\/p>\n

«F\u00f8r ECDGA<\/strong> fantes det ikke noe sentralt sted \u00e5 behandle sykdommen eller f\u00e5 informasjon, ingen organisasjon. Du kunne m\u00f8te en lege som tilb\u00f8d seg \u00e5 behandle deg, og finne ut at vedkommende aldri hadde behandlet en eneste ECD -pasient.» – omsorgsperson for en ECD pasient<\/em><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»1_2,1_2″ make_equal=»on» _builder_version=»4.27.4″ _module_preset=»default» border_width_bottom=»1px» border_color_bottom=»#f1f1f1″ global_colors_info=»{}»][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#35A4BB» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.4″ _module_preset=»default» text_orientation=»center» background_layout=»dark» global_colors_info=»{}»]»Det er s\u00e5 mye som er oppn\u00e5dd det<\/strong> siste ti\u00e5ret, b\u00e5de fra et vitenskapelig og et menneskelig perspektiv, og det er sv\u00e6rt lite av det som ikke har Alliansens fingeravtrykk p\u00e5 seg.» – ECD Forsker<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#FFFFFF» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_blurb use_icon=»on» font_icon=»||divi||400″ icon_color=»#35A4BB» image_icon_width=»60px» _builder_version=»4.27.4″ _module_preset=»default» body_text_align=»center» global_colors_info=»{}»]<\/p>\n

Det ble opprettet et st\u00f8ttenettverk for familier, og medlemmer av det internasjonale ECD -milj\u00f8et ble samlet til en serie \u00e5rlige konferanser – en mulighet for pasienter til \u00e5 m\u00f8te hverandre og snakke med leger som spesialiserer seg p\u00e5 ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»1_2,1_2″ make_equal=»on» _builder_version=»4.27.4″ _module_preset=»default» border_width_bottom=»1px» border_color_bottom=»#f1f1f1″ locked=»off» global_colors_info=»{}»][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#FFFFFF» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_blurb use_icon=»on» font_icon=»||divi||400″ icon_color=»#35A4BB» image_icon_width=»60px» _builder_version=»4.27.4″ _module_preset=»default» body_text_align=»center» global_colors_info=»{}»]<\/p>\n

Det ble opprettet et pasientregister for \u00e5 bygge opp et dataarkiv p\u00e5 ECD, og det ble inng\u00e5tt et samarbeid med NIH for \u00e5 rekruttere pasienter til en naturhistorisk studie – n\u00f8kkelen til \u00e5 forst\u00e5 hvordan sykdommen utvikler seg.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#35A4BB» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.4″ _module_preset=»default» text_orientation=»center» background_layout=»dark» global_colors_info=»{}»]»Global Alliance er eksemplarisk<\/strong>– de er virkelig p\u00e5drivere, de n\u00e5r ut til legene og f\u00e5r folk ut av siloene sine og i kontakt med hverandre.» – ECD Lege ved Care Center[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»1_2,1_2″ make_equal=»on» _builder_version=»4.27.4″ _module_preset=»default» border_width_bottom=»1px» border_color_bottom=»#f1f1f1″ global_colors_info=»{}»][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#35A4BB» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.4″ _module_preset=»default» text_orientation=»center» background_layout=»dark» global_colors_info=»{}»]»Denne organisasjonen f\u00f8les som en gave. Mennesker som er opptatt av \u00e5 fremme omsorgen for dem med ECD. Jeg har aldri opplevd et s\u00e5 oppriktig engasjement.» – ECD pasient<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=»1_2″ module_class=»ds-vertical-align» _builder_version=»4.27.4″ _module_preset=»default» background_color=»#FFFFFF» custom_padding=»40px|40px|40px|40px|true|true» border_radii=»on|20px|20px|20px|20px» box_shadow_style=»preset1″ box_shadow_color=»rgba(0,0,0,0.1)» global_colors_info=»{}»][et_pb_blurb use_icon=»on» font_icon=»||fa||900″ icon_color=»#35A4BB» image_icon_width=»60px» _builder_version=»4.27.4″ _module_preset=»default» body_text_align=»center» global_colors_info=»{}»]<\/p>\n

Og det mest sl\u00e5ende er at det bidro til \u00e5 muliggj\u00f8re arbeidet med genterapi som f\u00f8rte til FDA-godkjenning av et legemiddel som er effektivt i behandlingen av ECD.<\/p>\n

[\/et_pb_blurb][\/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 _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_text _builder_version=»4.27.4″ _module_preset=»default» custom_margin=»||17px|||» global_colors_info=»{}»]<\/p>\n

Flere prestasjoner<\/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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[et_pb_dmb_breadcrumbs _builder_version=»4.27.4″ _module_preset=»default» body_text_color=»#FFFFFF» body_font_size=»12px» link_text_color=»#35A4BB» custom_margin=»||5px||false|false» custom_padding=»||0px||false|false» body_font_size_tablet=»12px» body_font_size_phone=»10px» body_font_size_last_edited=»on|desktop» global_colors_info=»{}»][\/et_pb_dmb_breadcrumbs]V\u00e5rt oppdrag ECD Global Alliance er dedikert til bevisstgj\u00f8ring, st\u00f8tte, utdanning og forskning knyttet til Erdheim-Chester sykdom. Organisasjonen samarbeider […]<\/p>\n","protected":false},"author":14,"featured_media":58745,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-49758","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/49758","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=49758"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/49758\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/58745"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=49758"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}