Über uns
Unser Auftrag
Die ECD Global Alliance widmet sich der Sensibilisierung, Unterstützung, Aufklärung und Forschung im Zusammenhang mit der Erdheim-Chester Krankheit. Die Organisation arbeitet mit der weltweiten Gemeinschaft zusammen, um Folgendes zu erreichen:
Schärfen Sie das Bewusstsein für ECD. Wir bemühen uns, die Frühdiagnose der Krankheit zu erleichtern und das Interesse und die Bemühungen um mehr Wissen über die Krankheit und ihre Behandlung zu fördern.
Bieten Sie den von der Krankheit Betroffenen Unterstützung an. Wir werden auch weiterhin alle Möglichkeiten ausschöpfen, um die Belastung für die von ECD Betroffenen so weit wie möglich zu verringern. Die Bereitstellung von Informationen, Überweisungen und der persönliche Kontakt zu anderen Betroffenen sind nur einige der Unterstützungsmöglichkeiten, die über ECDGA angeboten werden.
Setzen Sie sich für Forschungsprogramme ein und unterstützen Sie diese. Der Zweck solcher Forschungsprogramme ist es, mehr zu erfahren über (a) die Krankheit, (b) wirksame Behandlungen für die Krankheit, (c) mögliche Heilmittel und/oder (d) Möglichkeiten, die Krankheit ganz zu verhindern. Dazu gehört unter anderem die Zusammenarbeit mit medizinischem Personal, Forschungspersonal und anderen Gesundheitsorganisationen, um die Bereiche zu definieren, in denen Forschungsbedarf besteht, um die Forschung zu finanzieren und um anderen Gesundheitsbehörden die Vorteile der Forschung von ECD nahezubringen. Die Allianz wird auch als Kanal für die Weitergabe benötigter Informationen von ihren Mitgliedern an die Forschungsgemeinschaft gemäß den dokumentierten Richtlinien dienen.
Kathy Brewer, Gründerin und Präsidentin
Teilen Sie Bildungsmaterial und erleichtern Sie den Informationsaustausch zwischen interessierten Parteien über ECD. Dazu gehört die Bereitstellung aktueller, zuverlässiger und sachlicher Informationen über ECD für Patienten, Angehörige, medizinisches Personal, Forschungspersonal, Medien und andere Organisationen. Dazu gehört auch die Förderung, das Sponsoring und die Durchführung von Workshops, Symposien und anderen Treffen zur Förderung der Ziele der Allianz.
Ein Jahrzehnt der Wirkung
Für die meisten Menschen beginnt die Erfahrung mit einer Erdheim-Chester Krankheit mit einer frustrierenden, beängstigenden Suche nach Antworten.
Das galt sicherlich für die Gründerin der ECD Global Alliance, Kathy Brewer, und ihren verstorbenen Ehemann Gary. Zum Zeitpunkt seines Todes war Gary bereits seit 20 Jahren krank und seit drei Jahren sehr krank. Er hatte Symptome einer Nierenerkrankung und unterzog sich sogar einer Nierentransplantation. Aber erst bei seiner Autopsie erfuhr Kathy Erdheim-Chester die wahre Ursache war.
Das ist die Herausforderung bei einer sehr seltenen Krankheit. Wenn eine Krankheit nur schätzungsweise 1.000 Menschen weltweit betrifft, sind nur wenige Ärzte mit der Diagnose vertraut, insbesondere wenn die Symptome von Knochenschmerzen und Gewichtsverlust bis hin zu Seh- und Gleichgewichtsproblemen reichen können. (Neben vielen anderen Körpersystemen kann ECD die Hypophyse und die Nebennieren, die Lunge, die Membran um das Herz, die Nieren und das Gehirn betreffen).
Die Geschichte von ECD ist heute jedoch bemerkenswert anders als im Jahr 2008, und der Grund dafür ist die ECD Global Alliance. Sie wurde von Patientenbetreuern ins Leben gerufen, die sich über das Internet gefunden haben. Die Allianz ist von sechs Familien auf fast 800 angewachsen und hat die Aussichten für ECD Patienten dramatisch verändert.
Heutzutage können die meisten ECD Patienten das Fortschreiten der Krankheit mit einer der verschiedenen Behandlungen, die heute eingesetzt werden, kontrollieren. Viele haben keine typische Lebenserwartung mehr von 3 bis 5 Jahren, sondern können die Symptome in den Griff bekommen, während sie ihr Leben weiterführen.
Unsere Hoffnung für die Zukunft
Informieren Sie sich über den 5-Jahres-Strategieplan, der derzeit von Ihrer Interessengruppe umgesetzt wird.
Die ECD Global Alliance hat eine Gemeinschaft geschaffen, die auf Zusammenarbeit und Partnerschaften zwischen Patienten, Familienmitgliedern, Freunden, Spendern, medizinischen Fachleuten und Forschern beruht. Als Gemeinschaft bietet die folgende Zeitleiste einen Überblick über einige der Erfolge, die sich daraus ergeben haben.
Die Allianz hat ein Netzwerk von Pflegezentren in führenden medizinischen Einrichtungen auf der ganzen Welt eingerichtet, die jeweils über ein Team von Spezialisten verfügen, die auf die Diagnose und Behandlung von ECD vorbereitet sind.
“Vor ECDGA gab es keine zentrale Stelle zur Behandlung der Krankheit oder zur Beschaffung von Informationen, keine Organisation. Sie trafen einen Arzt, der Ihnen anbot, Sie zu behandeln, und erfuhren, dass er noch nie einen ECD Patienten behandelt hatte.” – Betreuerin eines ECD Patienten
Sie schuf ein Unterstützungsnetzwerk für Familien und brachte Mitglieder der internationalen ECD Gemeinschaft zu einer Reihe jährlicher Konferenzen zusammen – eine Gelegenheit für Patienten, sich untereinander zu treffen und mit Ärzten zu sprechen, die auf ECD spezialisiert sind.
Sie hat ein Patientenregister eingerichtet, um ein Datenarchiv auf ECD aufzubauen, und ist eine Partnerschaft mit dem NIH eingegangen, um Patienten für eine Studie über den natürlichen Krankheitsverlauf zu rekrutieren – der Schlüssel zum Verständnis des Krankheitsverlaufs.
Und vor allem hat es die Arbeit in der Gentherapie ermöglicht, die zur FDA-Zulassung eines wirksamen Medikaments zur Behandlung von ECD geführt hat.
Weitere Errungenschaften
| 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. |