Erdheim-Chester Disease
ECD Global Alliance
Erdheim-Chester Disease
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The Disease Erdheim-Chester Disease (ECD) is an extremely rare disorder that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells (histiocytes ) whose normal function is to fight infections. The histiocytes accumulate in the loose connective tissue of many organs of the body and as a result this tissue becomes thickened, dense and fibrotic. Without successful treatment the disease is debilitating and can result in organ failure. ECD is often described in the medical literature as an extremely rare form of non-Langerhans-cell histiocytosis. There have been approximately 350 published papers of ECD in the world since it was first described in the literature in 1930 by the Austrian pathologist, Jakob Erdheim, and the American pathologist, William Chester. Because it is so rare and because it is not discussed in the common textbooks of medicine, many doctors have never heard of it. It is usually difficult to diagnose. For these reasons, some feel the disease could be under-diagnosed and may not be as rare as thought. For more information see the “What is ECD?” page.
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Ongoing Studies Patients diagnosed with Erdheim-Chester Disease are strongly encouraged to obtain and retain copies of their medical records. Having medical records easily accessible may help to reduce the number of medical tests that will need repeating. Sharing medical records with researchers will help in their quest to better understand ECD. Because there are so few people diagnosed with Erdheim-Chester Disease, it is difficult for researchers to access enough patients to perform meaningful research on the disease. A National Institutes of Health (NIH) study, “Clinical and Basic Investigations into Erdheim-Chester Disease”, is now underway. The goal of this study, which began in late 2011, is to understand the disease, identify its cause, and classify it according to presentation and progression. Patients are being solicited to participate. Please click here for more information. Tissue samples of ECD lesions/tumors are being requested by the NIH study above and a study being conducted at the Texas Children's Hospital in Houston, Texas. Please contact the organization (support@erdheim-chester.org), or the principal investigators of these studies, if you are an ECD patient and are planning surgery at the site of an ECD lesion or tumor. A study in Italy is currently requesting medical records of ECD patients. The aim of this study is better classification of the different disease forms, and improved prediction of patient prognosis. Without participation of patients this study, and others like it, cannot be successful. Click here for more information on this study. To read about all ongoing ECD studies currently looking for patient involvement see the ECD Studies page. We are encouraged that more studies will begin as researchers become aware there is a source of patient access and information. Please help by participating.
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How To Donate Although we wish it were not necessary, funds are required to support research and the activities of the ECD Global Alliance. The organization does everything possible to keep costs to an absolute minimum. Money raised is used to fund ECD-specific research, provide support to patients and their families, and to help raise awareness of this devastating disease within the medical community. Online donations can be made at www.razoo.com/story/ECD-Global-Alliance. Checks payable to the ECD Global Alliance can be mailed to the following address:
The ECD Global Alliance For more information, see the "How Can I Help?" page.
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How To Join We invite you to join us in our quest to help each other deal with the challenges of ECD.
Please register using our
online registration form.
You can also email There is no cost to register, we simply want to help reduce ECD related suffering as much as we possibly can. Your information will be kept confidential and will not be shared with any other organization or group. Only those individuals within the organization with a need to know will have access to your personal contact information. By joining together we are able to share information rapidly among each other and to provide researchers with a source of ECD patients and information. We believe the organization is proving that "Together we can make a difference."
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The Organization
A
group of patients from around the world and their loved ones have joined
together to create the ECD Global Alliance. Our mission is to: · Provide support to ECD patients and their loved ones · Raise awareness of ECD · Promoteand fund research aimed at finding more effective and rational treatments for ECD, with a cure being the ultimate goal · Share educational material regarding ECD We are NOT medical professionals. We cannot diagnose patients. We do not offer medical advice. We do not promote any particular treatment options. Rather, we are there for each other and try to gather information from the medical professionals so we can make it easily available. It is the responsibility of the patient, loved ones and medical team to evaluate the use of this information when developing a program of care. Our members deal with the everyday realities of coping with a rare, incurable disease (some have done this for decades). Until now, much of what has been learned, on the patient coping level, has been acquired through personal experience, one family at a time, one heart ache at a time. This group seeks to ease some of the hardships by helping newcomers to move from “panic” to “possibilities of care”. As non-medical people, patients with any rare disease (and their loved ones) face the challenge of acquiring timely, reliable information. Participants of this ECD Global Alliance share what their doctors are doing TODAY. If a treatment or procedure shows promise you can help fast track that information to your doctor. By educating ourselves we shorten the learning curve for patients and doctors and so reduce the burden of ECD for all. It is our pleasure to share with you what we’ve learned. We are ordinary people dealing with an extraordinary disease. For more information see the "ECD Global Alliance" page.
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Rare Disease Day February 29, 2012 is Rare Disease Day. Each year the last day of Febrauary is set aside to draw attention to rare diseases as an important public health issue that cannot be ignored. The ECD Global Alliance is proud to partner with the National Organization of Rare Disorders (NORD) in observing this day. For more information about events in the United States see www.rarediseaseday.us. To learn more about the global initiatives supported through rare disease day please visit www.rarediseaseday.org.
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Rare Diseases For those who may be searching for more information about rare diseases in general, the National Organization of Rare Disorders (NORD) is an organization that may be a valuable resource to you. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. You can reach this organization via their website, www.rarediseases.org, or by calling them at 1-203-744-0100 or 1-800-999-6673.
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Last updated: January 28, 2012