ECD Global Alliance
P.O. Box 1301
DeRidder, LA 70634
The Erdheim-Chester Disease Global Alliance (ECDGA) is a patient advocacy organization dedicated to helping those affected by ECD. The ECDGA’s mission is to advocate for ECD awareness, support patients and their loved ones, educate medical professionals about ECD and fund research to learn more about Erdheim-Chester Disease and tand find better treatment options.. The ECDGA is a 501c3 patient advocacy organization founded in 2009. To date, the ECDGA is the only non-profit organization of its kind in the world, supporting patients from around the world fighting Erdheim-Chester Disease.
We are raising funds to raise awareness of Erdheim-Chester Disease and to find better treatment options. The ECDGA continues to be contacted by families whose loved one has passed away from ECD undiagnosed. In these cases, diagnosis comes via an autopsy. Had those patients been diagnosed they most likely would have experienced a very different outcome with treatment. Therefore, the ECDGA finds it imperative to help patients get a correct diagnosis before it is too late. While current treatments are improving quality of life and length of life for patients, our goal is to bring about more breakthrough treatment options that will work for all patients. Ultimately it is hoped there will some day be a cure and preventative measures available.