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 a little more than 300 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 (April 2009 statistic). 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.

 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

·        Promote research that will help those affected by ECD

·        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.

 Research Grant Opportunities

The ECD Global Alliance is currently soliciting grant applications for funding of research projects focused on the pathophysiology or treatment of Erdheim-Chester Disease.

The grant application deadline is August 11, 2010, with the grant to be announced in October 2010.  This grant is open to all qualified researchers regardless of location.

For more information see the “Grants” page.

 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 and there are no paid positions within the ECD Global Alliance.  However, money is necessary to keep the organization functional and to successfully fund research projects.  If you are interested in donating, please send a check payable to the ECD Global Alliance to the following address:

The ECD Global Alliance
c/o Ralph Stallard, Treasurer
6375 Thomas Jefferson Hwy
Charlotte Courthouse,  Va  23923 USA

For more information, see the "Donations" page.

 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
support@erdheim-chester.org with any questions or comments you may have.

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 information.

 Other Organizations

Another organization, The Histiocytosis Association of America (HAA) has a mission to help those dealing with the effects of all rare histiocytic disorders by providing a variety of educational programs and emotional support services.  The Association promotes examination of histiocytic disorders, mainly those affecting children, through scientific and medical research, with the aim of establishing better treatments, a cure, and ultimately, prevention of the diseases.  You can reach this organization via their website, www.histio.org, or by calling them at 1-800-548-2758 or at 1-856-589-6614. 

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.