ECD Global Alliance Patient Survey
Consider answering at least one of the questions below so the ECDGA might craft messages to release for Erdheim Chester Disease Awareness Week. By giving an answer, you are giving the ECD Global Alliance permission to use this information on any materials created by the organization. CARETAKERS: Answer any questions for the person with ECD, as you are able.
Tell Us About Your ECD Journey
How long were you experiencing symptoms before your diagnosis?
Your answer
How long did it take to diagnose your ECD?
Your answer
How many doctors did you see before your ECD diagnosis?
Your answer
If you could share one thing with the general public about having ECD, what would it be?
Your answer
How did you feel when you first discovered the ECD Global Alliance (website, Facebook, etc.)?
Your answer
What is one thing you appreciate about the ECD Global Alliance community?
Your answer
Anything else?
Your answer
Your Information:
Name to be displayed with statement (Examples: Jane Nguyen, Jane N., JN, Anonymous) *
Your answer
If you would like to submit a photo to go with your survey answers, click on the link in the "Thank-you for submitting" message at the end. You will be asked to log in with a Google account (free).
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