What is a consensus? 

A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the disease. This group of experts agree on evidence-based and state-of-the-art (state-of-the-science) knowledge. Its main objective is to counsel physicians on the best possible and acceptable way to diagnose and treat certain diseases or how to address a particular decision-making area. It is usually a community-based expression of a consensus decision-making and publication process. 

Why is a healthcare consensus important and what it means for Erdheim-Chester Disease Patients? 

Erdheim-Chester Disease (ECD) is so rare that diagnosis can take months or even years. Once a diagnosis has been made, the process of treatment begins, which can also be quite extensive process. 

With the combined efforts of the leading ECD medical professionals from around the world, a new ECD consensus report has been created to alleviate some of the complexities that treating physicians are faced with. 

What does this mean for ECD patients? 

The goal of the consensus is to aid in improving diagnosis, treatment, and overall quality of life for Erdheim-Chester Disease patients by serving as guidelines for medical professionals treating patients. 

As a patient or family member, you can share the consensus document link with your medical teams. Communicate your thoughts and any questions about your current treatment and how it aligns with the new consensus document. 

The most recently published consensus guidelines can be found HERE.

If you have further questions or concerns about the latest consensus document, reach out to your ECD Care Center physician or the ECD Global Alliance team. We hope you will be sharing this information with your medical team.  

 

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