Om oss
Vårt oppdrag
ECD Global Alliance er dedikert til bevisstgjøring, støtte, utdanning og forskning knyttet til Erdheim-Chester sykdom. Organisasjonen samarbeider med det globale samfunnet for å oppnå følgende
Øke bevisstheten om ECD. Vi arbeider for å legge til rette for tidlig diagnostisering av sykdommen og for å stimulere til engasjement og innsats for å øke kunnskapen om sykdommen og behandlingene.
Gi støtte til dem som er rammet av sykdommen. Vi vil fortsette å forfølge alle muligheter for å lette byrden så mye som mulig for dem som er rammet av ECD. Informasjon, henvisninger og personlig kontakt med andre som er berørt av sykdommen, er bare noen av de hjelpetiltakene som tilbys gjennom ECDGA.
Arbeide for og støtte forskningsprogrammer. Formålet med slike forskningsprogrammer er å lære mer om (a) sykdommen, (b) effektive behandlinger for sykdommen, (c) mulige kurer og/eller (d) måter å forebygge sykdommen på. Dette vil inkludere, men ikke nødvendigvis være begrenset til, samarbeid med medisinsk personell, forskningspersonell og andre helseorganisasjoner for å bidra til å definere områder der det er behov for forskning, for å finansiere forskning og for å bidra til å fremme fordelene ved ECD forskning overfor andre helseinstanser. Alliansen vil også fungere som en kanal for å overføre nødvendig informasjon fra medlemmene til forskningsmiljøet i henhold til dokumenterte retningslinjer.
Kathy Brewer, grunnlegger og president
Del opplæringsmateriell og legg til rette for informasjonsutveksling mellom interesserte parter om ECD. Dette innebærer blant annet å gi aktuell, pålitelig og faktabasert informasjon om ECD til pasienter, pårørende, medisinsk personell, forskningspersonell, media og andre organisasjoner. Det vil også omfatte promotering, sponsing og gjennomføring av workshops, symposier og andre møter for å fremme alliansens mål.
Et tiår med innflytelse
For de fleste begynner en sykdomserfaring Erdheim-Chester sykdom med en frustrerende og skremmende søken etter svar.
Dette gjaldt i høyeste grad for ECD Global Alliance-grunnleggeren Kathy Brewer og hennes avdøde ektemann Gary. Da Gary døde, hadde han vært syk i 20 år, og svært syk i tre år. Han hadde symptomer på nyresykdom, og gjennomgikk faktisk en nyretransplantasjon. Men det var ikke før obduksjonen at Kathy fikk vite Erdheim-Chester var den egentlige årsaken.
Dette er utfordringen med en svært sjelden sykdom. Når en tilstand bare rammer anslagsvis 1000 mennesker på verdensbasis, er det få leger som har den nødvendige kunnskapen som kreves for å diagnostisere den, særlig når den kan manifestere seg med symptomer som spenner fra bensmerter og vekttap til problemer med syn og balanse. (Blant mange kroppssystemer kan ECD påvirke hypofysen og binyrene, lungene, membranen rundt hjertet, nyrene og hjernen).
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 pårørende som fant hverandre via Internett, og har vokst fra seks familier til nesten 800, noe som har endret fremtidsutsiktene for ECD -pasienter dramatisk.
I dag kan de fleste ECD pasienter kontrollere sykdomsutviklingen med en av de mange behandlingene som nå er i bruk. Mange har gått fra å ha en forventet levealder på 3-5 år til å kunne håndtere symptomene mens de lever videre.
Vårt håp for fremtiden
Les om den femårige strategiplanen som for tiden implementeres av interesseorganisasjonen din.
ECD Global Alliance har skapt et fellesskap basert på samarbeid og partnerskap mellom pasienter, familiemedlemmer, venner, givere, medisinsk fagpersonell og forskere. Følgende tidslinje gir en oversikt over noen av de resultatene som har blitt oppnådd som et resultat av dette fellesskapet.
Alliansen har etablert et nettverk av omsorgssentre ved ledende medisinske institusjoner internasjonalt, hvert senter har et team av spesialister som er forberedt på å diagnostisere og behandle ECD.
«Før ECDGA fantes det ikke noe sentralt sted å behandle sykdommen eller få informasjon, ingen organisasjon. Du kunne møte en lege som tilbød seg å behandle deg, og finne ut at vedkommende aldri hadde behandlet en eneste ECD -pasient.» – omsorgsperson for en ECD pasient
Det ble opprettet et støttenettverk for familier, og medlemmer av det internasjonale ECD -miljøet ble samlet til en serie årlige konferanser – en mulighet for pasienter til å møte hverandre og snakke med leger som spesialiserer seg på ECD.
Det ble opprettet et pasientregister for å bygge opp et dataarkiv på ECD, og det ble inngått et samarbeid med NIH for å rekruttere pasienter til en naturhistorisk studie – nøkkelen til å forstå hvordan sykdommen utvikler seg.
Og det mest slående er at det bidro til å muliggjøre arbeidet med genterapi som førte til FDA-godkjenning av et legemiddel som er effektivt i behandlingen av ECD.
Flere prestasjoner
| Year | Accomplishment | Details |
|---|---|---|
| 2025 | 10th Annual ECD Conference held in Barcelona, Spain, in partnership with Hospital Universitari de Bellvitge | 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. |
| Rheumatology Conference ECD Awareness Exhibit Planned | The ECDGA will attend the American College of Rheumatology (ACR) conference in Chicago, October 24-29, 2025. | |
| Monthly Webinars | Monthly webinars are held to share information to ease the burden of living with ECD. | |
| Updated ECDGA Website | A more modern website was released by the ECDGA that fully supports 11 languages. | |
| 2024 | 9th Annual Conference held in Seattle, WA, USA, in partnership with the University of Washington and Fred Hutch Cancer Center | 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. |
| Endocrinology Conference ECD Awareness Exhibit | The ECDGA hosted a booth at the Endocrinology conference, ENDO 2024, in Boston, Massachusetts, June 1-4, 2024. | |
| Ophthalmology Conference ECD Awareness Exhibit | The ECDGA hosted an awareness booth at the American Academy of Ophthalmology (AAO) in Chicago, Illinois, from October 18-21, 2024. | |
| Radiology Conference ECD Awareness Exhibit | The ECDGA hosted an awareness booth at the Radiological Society of North America (RSNA) conference in Chicago, Illinois, from December 1-4, 2024. | |
| Pathology Conference ECD Awareness Exhibit | The ECDGA hosted an awareness booth at the United States and Canadian Academy of Pathology (USCAP) in Baltimore, Maryland, from March 25-27, 2024. | |
| Virtual Chats | 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. | |
| $50,000 ECD research grant awarded to Francesco Peyronel, MD, at Meyer Children’s University Hospital in Firenze, Italy. | Dr. Peyronel was awarded the grant to study “A New Comprehensive Approach to Predict Long-Term Prognosis in Erdheim-Chester Disease: From Cluster Analysis to Patient-Reported Outcomes”. | |
| 2023 | 8th Annual ECD Conference held in Rochester, Minnesota, in partnership with Mayo Clinic | 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. |
| Neuro-oncology Conference ECD Awareness Exhibit | The ECDGA hosted an awareness booth at the Society of Neuro-Oncology (SNO) conference in Vancouver, British Columbia, from November 15 – 19, 2023. | |
| $200,000 grant awarded in partnership with the Leukemia and Lymphoma Society (LLS) to Matthew Collin, MD, PhD at Newcastle University in the UK. | Dr. Collin was awarded the grant to study “Inferring the origin of Erdheim-Chester Disease from Phylogenetic”. | |
| $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 | Dr. Goyal was awarded the grant to study “A Multi-Center, Multi-National Investigation of Survivorship and Patient-Reported Symptoms in Erdheim-Chester Disease”. | |
| $50,000 grant awarded to Egle Kvedaraite, MD at Karolinska Institutet in Stockholm, Sweden. | Dr. Kvedaraite was awarded the grant to study “Spatial understanding of Erdheim-Chester disease origin and lesional microenvironment for future precision medicine.” | |
| $20,000 Grant Awarded to Jithma Abeykoon, MD at the Mayo Clinic in Rochester, MN, USA. | Dr. Abeykoon was awarded the grant in partnership with Uplifting Athletes to study “Prognostic and Therapeutic Significance of Chromosome Region Maintenance 1 (CRM1) Protein in Erdheim-Chester Disease”. | |
| 2022 | Three Regional ECD meetings held | 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. |
| 2nd FDA-Approved Drug: Cobimetinib (Cottelic) | 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. | |
| Hematology Conference ECD Awareness Exhibit | 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. | |
| $50,000 Grant Awarded to Francesco Pegararo, MD at Meyer Chidren’s University Hospital in Firenze, Italy in Firenze, Italy | Dr. Pegoraro was awarded the grant to study “Exploring the genetic landscape of Erdheim-Chester disease by integrating GWAS and -omic data.” | |
| $20,000 Grant Awarded to Gaurav Goyal, MD at the University of Alabama at Birmingham in Alabama, USA | Dr. Goyal was awarded the grant in partnership with Uplifting Athletes to study “Burden of morbidity and premature mortality in patients with Erdheim-Chester disease.” | |
| 2021 | Webinars, Chats, and Strategy continue | 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. |
| NCCN Guidelines | The National Comprehensive Cancer Network (NCCN) Guidelines® for Histiocytosis were published, as discussed and planned through the ECD Care Center Referral Network meetings managed through the ECDGA leadership. | |
| Virtual Medical Symposium | With a pandemic that no one expected or hoped for, the annual events 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. | |
| 2020 | Community Webinars | The COVID pandemic led to the ECDGA providing Educational webinars 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. |
| High-Level Strategy Planning | 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. Organization leaders met to set a direction to continue the track record of community accomplishments. | |
| 2019 | 7th Annual ECD Conference held in Milan, Italy, in partnership with San Raffaele Scientific Institute | 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. |
| Endocrinology Conference ECD Awareness Exhibit | 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. | |
| Second Consensus Article Published | 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. | |
| $50,000 ECD research grant awarded to Dr. Nicole Coufal at UCSD | Dr. Coufal was awarded a grant to study “Pathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis.” | |
| Chat Program | 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. | |
| 2018 | 6th Annual ECD Conference held in Orlando, FL in partnership with Orlando Health | A total of 109 members from eight countries attended to learn about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and about care management. This conference was co-hosted by Dr. Julio Hajdenberg. |
| Hematology Conference ECD Awareness Exhibit | Hematologists from around the world eagerly engage with ECDGA exhibitors at the American Society of Hematologists (ASH) to learn more about Erdheim-Chester Disease. | |
| Grand Round Medical Presentations | ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist. | |
| 2017 | 1st FDA-Approved Drug: Vemurafenib (Zelboraf) | 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. |
| 5th Annual ECD Conference held in New York in partnership with Columbia University and Memorial Sloan Kettering Cancer Center | 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, 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. | |
| Care Centers Added to Network | Locations in Israel, China, Nashville, Canada, and Australia were welcomed to the network. | |
| Grand Round Medical Presentations | ECD-knowledgeable physicians were sponsored by the ECDGA to give educational talks at universities in Houston, TX, New Orleans, and Shreveport, LA. | |
| Pathology Conference ECD Awareness Exhibit | 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. | |
| $50,000 ECD research Grant Awarded to Dr. Benjamin Durham at MSK | Dr. Durham was awarded a grant to study “Defining the Cell-of-Origin of Erdheim-Chester Disease.” | |
| 2016 | 4th Annual ECD Conference held in Paris, France, in partnership with Hôpital Pitié-Salpêtrière | The first European conference, held in Paris, France, included 63 attendees from 17 different countries who heard from 16 physicians about ECD organ involvement, the use of scans to monitor the disease and its treatments, techniques to manage pain, and the latest research findings, including treatment options. The first European ECD Medical Symposium was held in Paris, France, at Hôpital Pitié-Salpêtrière, where over 50 physicians gathered to collaborate and share data on ECD. This meeting was co-hosted with Prof. Julien Haroche. |
| $43,000 ECD research grant was awarded to Dr. Eli Diamond at Memorial Sloan Kettering | Dr. Eli L. Diamond was awarded a grant to study “A Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease.” | |
| $50,000 ECD research grant was awarded to Dr. Filip Janku at MD Anderson and Dr. Omar Abdel-Wahab at Memorial Sloan Kettering | Drs. Janku and Abdel-Wahab were awarded a grant to study “Understanding and Targeting Novel Molecular Alterations in Erdheim-Chester disease Without the BRAFV600E Mutation.” | |
| $50,000 ECD research grant was awarded to Dr. Marina Ferrarini and Dr. Lorenzo Dagna at San Raffaele Scientific Institute | Drs. Ferrarini and Dagna were awarded a grant to study “Tailoring Treatments for Erdheim-Chester Disease.” | |
| 10 Languages Added to Website | Volunteers from around the globe dedicated their time and talents to translating important content into ten languages for the ECDGA website. | |
| 2015 | 3rd Annual ECD Conference held in Houston, Texas, in partnership with MD Anderson Cancer Center | 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. |
| Development of ECD Referral Care Center Network | Care centers 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 serving patients. | |
| New Website | An updated website was developed to engage members on all devices. | |
| $313,000 Grant was awarded to Dr. Eli L. Diamond at Memorial Sloan Kettering and Pr. Matthew Collin at Newcastle University | 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. | |
| 2014 | 2nd ECD Conference held in Bethesda, Maryland, in partnership with the National Institutes of Health | 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. |
| Consensus guidelines for ECD treatment are published | The “Consensus guidelines for the diagnosis and clinical management of Erdheim-Chester Disease” are published in the journal, Blood. | |
| 2013 | 1st ECD International Conference held in San Diego, California | In addition to the patient meeting, the first international meeting was held this year, inviting doctors to present ECD research, case studies, and treatments. 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. |
| ECD Documentary Film | A patient documentary film was developed and produced to support outreach and education of Erdheim-Chester disease. | |
| $50,000 ECD Research Grant Awarded to Drs. Omar Abdel-Wahab, David Hyman, and Eli Diamond at Memorial Sloan Kettering Cancer Center | $50,000 was awarded to Drs. Abdel-Wahab, Diamond, and Hyman at Memorial Sloan-Kettering Cancer Center (MSK). “Somatic Genetic Alterations in the Pathogenesis and Therapy of Histiocytic Disorders” | |
| 2012 | $47,000 ECD Research Grant Awarded to Dr. Julien Haroche and Dr. Laurent Arnaud at Hôpital Pitié-Salpêtrière | Drs. Haroche and Arnaud were awarded a grant to study “Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis” |
| 1st ECD Medical Meeting | A meeting was held in Houston, TX, attended by investigators from various institutions in the US. | |
| 2011 | $50,000 ECD Research Grant Awarded to Dr. Lorenzo Dagna at San Raffaele Scientific Institute | Dr. Dagna was awarded a grant to study “Hypoxia and inflammation in Erdheim-Chester disease microenvironment: Insights on the pathogenesis and implications for therapy”. |
| ECD Natural History Study | 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. NIH clinical director, William Gahl, M.D., Ph.D., and principal investigator, Juvianee Estrada-Veras, M.D., along with Kevin O’Brien, 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. | |
| 2010 | 501(c)3 Tax Exemption Granted | ECDGA was granted federal tax exemption status following the formation of the Board of Directors and Medical Advisory Board. |
| First multi-center study | The ECDGA is | |
| 2009 | Treatment protocols begin to be published | The ECDGA is able to share studies and treatment protocols to community members based as documented in peer-reviewed publications |
| ECDGA forms leadership boards | The ECDGA Board of Directors and Medical Advisory Board are formed. | |
| 2008 | ECD Caregivers Meet | In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet. |
| First Chat Session Held | With a spirit of “If you build it, they will come,” an online chat session was scheduled for all those affected by ECD. We started with a group representing only six patients. | |
| ECD Website Published | A website was created with the hope that it would provide much-needed information to families in search of answers for this rare illness. |