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

Aug 20, 2019 | 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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