Welcome to your home for all things Mayo Clinic Hematology. At Mayo Clinic, hematologists work in collaboration with teams of experts from virtually every medical and surgical specialty for the care of adults and children with blood diseases, including various cancers of the blood and bone marrow.

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Aug 20, 2019

Erdheim-Chester disease (ECD): Treatment and finding a specialist

By Justin McClanahan, @JustinMcClanahan

You've been diagnosed with Erdheim-Chester disease (ECD), now what? Doctors Ronald Go and Gaurav Goyal discuss what comes after receiving your diagnosis of ECD – treatment options, waiting and watching, and how you can find a specialist to best care for your rare and complex disease.

ECD Treatment options:

  • Chemotherapy
  • Biological agents
  • Waiting and watching
  • Others, watch below

Now that you have learned a bit more about treatment options, how can you work with your provider and find a specialist to determine the best care moving forward and for the long-term? Doctors Ronald Go and Gaurav Goyal discuss some tips below.

ECD and how to find a specialist and work with your provider for the best care:

Have you or a loved one been diagnosed with ECD or another type of rare blood disease? Meet other Connect members talking about rare diagnoses in the Blood Cancers & Disorders group where you find conversations like "Help with histiocytes."

Find out more about the ECD Global Alliance.

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