हमारे बारे में
हमारा विशेष कार्य
ECD ग्लोबल अलायंस Erdheim-Chester रोग से संबंधित जागरूकता, सहायता, शिक्षा और अनुसंधान के लिए समर्पित है। यह संगठन निम्नलिखित को पूरा करने के लिए वैश्विक समुदाय के साथ काम करता है:
ECD के बारे में जागरूकता बढ़ाएं. हम रोग का शीघ्र निदान करने तथा रोग और उपचार के संबंध में ज्ञान बढ़ाने के लिए प्रयास और चिंता को प्रोत्साहित करने का प्रयास करते हैं।
रोग से प्रभावित लोगों को सहायता प्रदान करें। हम ECD से प्रभावित लोगों के बोझ को यथासंभव कम करने के लिए सभी रास्ते अपनाते रहेंगे। बीमारी से प्रभावित अन्य लोगों को जानकारी, रेफरल और व्यक्तिगत संपर्क प्रदान करना ECDGA के माध्यम से दी जाने वाली सहायताओं में से कुछ हैं।
अनुसंधान कार्यक्रमों का समर्थन एवं समर्थन करना। ऐसे शोध कार्यक्रमों का उद्देश्य (ए) बीमारी, (बी) बीमारी के लिए प्रभावी उपचार, (सी) संभावित इलाज और/या (डी) बीमारी को पूरी तरह से रोकने के तरीकों के बारे में अधिक जानना है। इसमें चिकित्सा कर्मियों, शोध कर्मियों और अन्य स्वास्थ्य संगठनों के साथ सहयोग करना शामिल होगा, लेकिन जरूरी नहीं कि यह इन्हीं तक सीमित हो, ताकि उन क्षेत्रों को परिभाषित करने में मदद मिल सके जहां शोध की आवश्यकता है, शोध को वित्तपोषित किया जा सके और अन्य स्वास्थ्य एजेंसियों को ECD शोध के लाभों को बढ़ावा देने में मदद मिल सके। गठबंधन अपने सदस्यों से आवश्यक जानकारी को प्रलेखित दिशा-निर्देशों के अनुसार शोध समुदाय तक पहुँचाने के लिए एक माध्यम के रूप में भी काम करेगा।
कैथी ब्रूअर, संस्थापक और अध्यक्ष
ECD के संबंध में शैक्षिक सामग्री साझा करें और इच्छुक पक्षों के बीच सूचना साझा करने में सुविधा प्रदान करें। इसमें मरीजों, प्रियजनों, चिकित्सा कर्मियों, शोध कर्मियों, मीडिया और अन्य संगठनों को ECD से संबंधित वर्तमान, विश्वसनीय और तथ्यात्मक जानकारी प्रदान करना शामिल है। इसमें गठबंधन के लक्ष्यों को बढ़ावा देने के लिए कार्यशालाओं, संगोष्ठियों और अन्य बैठकों को बढ़ावा देना, प्रायोजित करना और आयोजित करना भी शामिल होगा।
प्रभाव का एक दशक
अधिकांश लोगों के लिए, Erdheim-Chester रोग का अनुभव उत्तर की निराशाजनक, भयावह खोज से शुरू होता है।
यह बात निश्चित रूप से ECD ग्लोबल अलायंस की संस्थापक कैथी ब्रूअर और उनके दिवंगत पति गैरी के लिए सच थी। अपनी मृत्यु के समय गैरी 20 वर्षों से बीमार थे और तीन वर्षों से बहुत बीमार थे। उनमें किडनी की बीमारी के लक्षण थे और वास्तव में, उनका किडनी ट्रांसप्लांट भी हुआ था। लेकिन कैथी को उनके शव परीक्षण के बाद ही पता चला कि Erdheim-Chester ही असली कारण था।
यह एक बहुत ही दुर्लभ बीमारी के साथ चुनौती है। जब कोई स्थिति दुनिया भर में केवल अनुमानित 1,000 लोगों को प्रभावित करती है, तो कुछ ही चिकित्सकों के पास इसका निदान करने के लिए आवश्यक जानकारी होती है, खासकर जब यह हड्डियों में दर्द और वजन घटने से लेकर दृष्टि और संतुलन की समस्याओं तक के लक्षणों के साथ प्रकट हो सकती है। (कई शारीरिक प्रणालियों में, ECD पिट्यूटरी और एड्रेनल ग्रंथियों, फेफड़ों, हृदय, गुर्दे और मस्तिष्क के आसपास की झिल्ली को प्रभावित कर सकता है।)
हालांकि, आज ECD कहानी 2008 की तुलना में काफी अलग है और इसका कारण है ECD ग्लोबल अलायंस। इंटरनेट के माध्यम से एक-दूसरे से मिलने वाले मरीज़ों की देखभाल करने वालों द्वारा शुरू किया गया यह अलायंस छह परिवारों से बढ़कर लगभग 800 परिवारों तक पहुँच गया है और इसने ECD मरीजों के लिए दृष्टिकोण को नाटकीय रूप से बदल दिया है।
आज, अधिकांश ECD रोगी कई उपचारों में से किसी एक के साथ रोग की प्रगति को नियंत्रित कर सकते हैं। कई लोग 3-5 साल की सामान्य जीवन प्रत्याशा का सामना करने से लेकर अपने जीवन को आगे बढ़ाते हुए लक्षणों का प्रबंधन करने तक पहुँच गए हैं।
भविष्य के लिए हमारी आशा
आपके वकालत समूह द्वारा वर्तमान में क्रियान्वित की जा रही 5-वर्षीय रणनीति योजना के बारे में पढ़ें।
एलायंस ने अंतरराष्ट्रीय स्तर पर अग्रणी चिकित्सा संस्थानों में देखभाल केंद्रों का एक नेटवर्क स्थापित किया, जिनमें से प्रत्येक में ECD निदान और उपचार के लिए विशेषज्ञों की एक टीम तैयार है।
” ECDGA से पहले , बीमारी का इलाज करने या जानकारी प्राप्त करने के लिए कोई केंद्रीय स्थान नहीं था, कोई संगठन नहीं था। आप किसी डॉक्टर से मिलते थे जो आपका इलाज करने की पेशकश करता था और आपको पता चलता था कि उन्होंने कभी किसी ECD मरीज का इलाज नहीं किया है।” – ECD मरीज की देखभाल करने वाला
इसने परिवारों का एक सहायता नेटवर्क बनाया और अंतर्राष्ट्रीय ECD समुदाय के सदस्यों को वार्षिक सम्मेलनों की एक श्रृंखला के लिए एक साथ लाया – जो रोगियों के लिए एक-दूसरे से मिलने और ECD में विशेषज्ञता रखने वाले डॉक्टरों से बात करने का एक अवसर था।
इसने ECD पर डेटा का संग्रह बनाने के लिए एक रोगी रजिस्ट्री शुरू की तथा प्राकृतिक इतिहास अध्ययन के लिए रोगियों की भर्ती करने के लिए एन.आई.एच. के साथ साझेदारी की – जो रोग की प्रगति को समझने के लिए महत्वपूर्ण है।
और, सबसे आश्चर्यजनक बात यह है कि इसने जीन थेरेपी में कार्य को संभव बनाने में मदद की, जिसके परिणामस्वरूप ECD उपचार में प्रभावी दवा को एफडीए की मंजूरी मिली।
अधिक उपलब्धियां
| Year | Accomplishment | Details |
|---|---|---|
| 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. |
| 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 | Educational webinars hosted by our expert medical members replaced the in-person events 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. Over the past decade, it 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. Going forward, with expanded donor investment, the Alliance has plans to accomplish even more. | |
| 2019 | Endocrinology Conference ECD Exhibit | The purpose of the ECD Global Alliance exhibition is 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 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 of the disease and the treatment of patients worldwide. | |
| 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 | Hematology Exhibit | Hematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease. |
| Grand Round Medical Presentations | ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist. | |
| 6th Annual Event held in Orlando, FL at 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. | |
| 7th Annual Events held in Milan, Italy | 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 Dr. Lorenzo Dagna. | |
| $50,000 Grant Awarded to Dr. Nicole Coufal at UCSD (Announced in 2020) | In 2019, a $50,000 young investigator award was granted to Nicole Coufal with the University of California, San Diego. “Pathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis” | |
| 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. |
| 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 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. | |
| 5th Annual Events in New York | 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. Eli L. Diamond. | |
| $50,000 Grant Awarded to Dr. Benjamin Durham at MSK (Announced in 2018) | The ECD Global Alliance awards Erdheim-Chester disease research grant to MSK to define the disease-initiating cell population in ECD and compare genetic alterations. | |
| 2016 | 4th Annual ECD Patient & Family Gathering | The first European event, 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. This meeting was co-hosted with Prof. Julien Haroche. |
| 4th ECD Medical Symposium | 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. | |
| 10 Languages Added to Website | Volunteers from around the globe dedicated their time and talents to translating important content in ten languages for the ECDGA website. | |
| 2015 | Development of ECD 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. | |
| $143,000 for Three Research Grants Awarded | ||
| 3rd Annual Patient & Family Gathering | Patients, families, and physicians united in Houston, TX for a memorable two-day gathering. | |
| 3rd Annual ECD Medical Symposium | The symposium was hosted at MD Anderson Cancer Center, with Dr. Filip Janku. | |
| 2014 | 2nd ECD Patient & Family Gathering | Patients and family members gather in Bethesda, MD for another two-day meeting including ECD presentations delivered by the experts. |
| 2nd International Medical Symposium | Physicians and researchers presented their work and discussed the state of Erdheim-Chester disease care for patients around the world. | |
| $316,000 Grant to Dr. Eli L. Diamond and Pr. Matthew Collin (Announced in 2015) | 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. | |
| 2013 | 1st ECD Medical Symposium | 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 meetings have continued to take place around the world each year since. |
| ECD Documentary Film | A patient documentary film was developed and produced to support outreach and education of Erdheim-Chester disease. | |
| 3rd ECD Research Grant Awarded | $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 | 2nd ECD Research Grant Awarded | $50,000 was awarded to Drs. Haroche and Arnaud ECD research. “Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis” |
| 1st ECD Medical Meeting | A meeting was held in Houston, TX with investigators from various institutions in the US. | |
| 1st ECD Patient & Family Gathering and Medical Symposium | ECD patients and their families came together for the first time this year and the annual event has been a successful way to bring families together ever since. | |
| 2011 | First Grant Awarded to ECD Research | For the first time, $50,000 was awarded to an ECD researcher, and each year following. This progressive mission has set out to enhance research discoveries in Erdheim-Chester disease with the leading researchers and institutions in the field. A total of $750,000 has been granted toward this initiative to date. |
| ECD Natural History Study | The National Institute of Health (NIH) was integral in ECD research and pursuing new treatments that help educate the medical community about ECD. NIH clinical director, William Gahl, M.D., Ph.D., and principal investigator, Juvianee Estrada-Veras, M.D. 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 following the formation of the Board of Directors and Medical Advisory Board. |
| 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. |