Experts in Erdheim-Chester Disease

What is an expert in ECD?

Following the definition established after many discussions among experts involved in histiocytoses for many years, we define two levels of expertise in ECD.

Centres of Reference:

We define centres of reference according to the definition of the European Union Committee of Experts on Rare Diseases (EUCERD), former Rare Diseases Task Force (RDTF).
Choose "Reports" there.

Centres of Expertise / Specialised Centres:

Centres are only listed in this category, if there is at least one responsible person who fulfils at least one of the following criteria:

Minimum number of peer reviewed publications about ECD: 1 OR
Multiple patients with ECD seen/treated

List of experts for Erdheim-Chester Disease:

We are currently creating a map of experts for Erdheim-Chester disease who fullfil the criteria for expertise we have laid down.

Until this map is available, you can find a list of doctors with knowledge in ECD on the webpage of the ECD Global Alliance:

Link to the webpage of an international group of ECD patients and their loved ones
Choose PHYSICIANS from the menu to access the list of doctors with knowledge in Erdheim-Chester disease.