Erdheim-Chester Disease (ECD) is a complex and rare condition that can affect multiple organs and systems in the body. From the bones and heart to the kidneys and brain, ECD’s impact is often widespread. Because of this, a team-based, multidisciplinary approach to care isn’t just helpful—it’s essential.

When specialists from different fields work together, patients benefit from comprehensive, coordinated care that addresses the unique challenges ECD presents. A multidisciplinary team might include oncologists, neurologists, cardiologists, nephrologists, endocrinologists, and radiologists, among others. Each expert contributes their knowledge and experience to create a treatment plan tailored to the individual needs of the patient.

At the Erdheim-Chester Disease Global Alliance (ECDGA), we understand how important it is for patients to have access to expert care. That’s why we’ve developed the ECD Referral Care Center Network—a worldwide network of institutions committed to providing multidisciplinary care for those living with ECD. These centers offer access to experienced teams and can collaborate with a patient’s local doctors to ensure continuity of care close to home. 

Explore the ECD Care Centers and find one near you: Care Centers Worldwide
Have questions? Contact us for more information: Contact ECDGA

If travel to an ECD Care Center is not possible, the doctors at the Care Centers will consult with your local doctors. If the need arises, have your local doctor contact one of the Care Center physicians for a consultation.

By working together, we can help improve outcomes and quality of life for those living with ECD. You are not alone on this journey—an entire team is here to help.