Erdheim-Chester Disease Global Alliance

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What is Erdheim-Chester Disease?

Erdheim-Chester Disease 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 whose normal function is to fight infections. These cells, which are called histiocytes, infiltrate the loose connective tissue of the body. As a result this tissue becomes thickened, dense and fibrotic. Multiple different organs can be affected. Unless successful treatment is found, organ failure can result.

ERDHEIM-CHESTER
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NEED MORE INFORMATION?

Contact the ECDGA Patient Navigator. The Patient Navigator can guide people diagnosed with ECD and their family members through their healthcare journey, helping to find needed information to obtain the best medical care possible.

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ECD CARE CENTER NETWORK

A network of ECD Care Centers is available to help patients find knowledgeable doctors to confirm a diagnosis and to provide treatments and ongoing care. These institutions are committed to having a team of specialists available to provide the best care to ECD patients. Additionally, there are ongoing ECD trials/studies that are currently accepting ECD patients. Contact our Patient Navigator for more information.