Erdheim-Chester Disease Global Alliance

What resources are available to help my patient?

The care of an ECD patient can be complex and often requires a team of specialists. In addition, the understanding of ECD and the number of treatments found to successfully help in the treatment and management of ECD patients is growing rapidly. For these reasons, it is strongly encouraged for medical providers to contact the staff at the ECD Referral Care Centers.

The Referral Centers have committed to having a team of specialists available to provide the best care to ECD patients. The contacts at each of the ECD Referral Centers have also agreed to provide formal or informal consultation on ECD cases at other centers, subject to local policies and procedures related to performing these consultations.

The information found in the following sections is meant to provide help to the medical professionals who are helping one or more ECD patients. If you need help, please feel free to contact the organization.

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