Knowledgable Doctors

Medical Professional Contacts

Medical Professionals with Erdheim-Chester Disease Knowledge/Experience

Often times a patient cannot travel to an ECD Care Center. In this case a patient may need physician close to home who is knowledgeable about ECD and the care of someone living with ECD.

The ECDGA Patient Navigator has access to information about physicians outside of Care Centers who are familar with ECD. If you are a patient or family member, and need information about physicians outside of Care Centers, please contact us.

If you are a medical professional and would like to include your name and contact information to the ECD Global Alliance to help patients find you, please contact us.

If you are a medical professional interested in having your institution added to the ECD Care Center Referral Network, please contact us.

Each Care Center must be dedicated to ensuring ECD patients receive an expert level of care.

Becoming a care center requires the completion of a self-nomination form. Requested information includes providing data to show that your team is able to provide appropriate care and support to people living with ECD.