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Dera Anonymous,
I am so sorry to hear that you have been affected by ECD. It is a most puzzling diease, but there are other patients you can connect with. The ECD Global Alliance is a group of patients and loved ones who have been affected by Erdheim-Chester Disease. Please register with this organization at www.erdheim-chester.org.

The organization has an online chat session every Saturday at 3 pm Eastern time. You can join in by going to - http://www.chatzy.com/427437211406 and following the prompts. This session is attended by ECD patients and their families. It is a great way to connect with others who have been living with ECD. I hope you will join.

If you would like more information, please email [email protected]


October 28, 2011 - 6:52pm


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