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.

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  •  2017 ECD EVENT


    The first FDA approval for Erdheim Chester disease has just been announced! In the US, Vemurafenib is now an approved treatment for ECD patients with the gene mutation called BRAF V600. Thank you to all of the researchers, physicians, their teams, and especially to the patients who participated in the study to make this possible!

    November 15, 2018

    Matching Grant Fundraiser

    Support the ECD Global Alliance until December 31, 2017 and double your donation! All donations will be matched up to $25,000! You would be helping the ECD community reach the goal of $50,000 total toward projects goals for 2018! Thank you for the support!


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