Rare-Type Ehlers Danlos Syndrome Survey
answers can be made anonymously and are used as discussion points for meetings
How often do you find that practitioners are knowledgeable about hEDS, but not about your type?
All the time
Pretty often
Sometimes
Not usually
Have you ever experienced medical mistreatment directly related to a misunderstanding of your type being presumed as hEDS?
Yes
No
Have you ever felt as if you “don’t belong” in the greater EDS community?
Yes
No
Do you feel as though you have been questioned about the validity of your condition more in the last 5 years than before?
Yes
No
Have you experienced new (in the last 5 years) difficulties in accessing proper care/resources specific to your type?
Yes
No
Have you ever had a practitioner tell you that you are the “most severe case” of EDS they’ve ever seen?
Yes
No
Do you feel that EDS has become “trendy” online?
Yes
No
If you answered "yes" to the above question, do you feel this has been harmful to people with rare EDS types?
Yes
No
No, and I feel as though this has been helpful to people with rare types
If the 2026 EDS reclassification included a renaming, would you be in support of rare types being separated from hEDS/HSD?
100% yes
Neutral
No
If you answered 100% yes to the above question, tell me more (i.e. rare types should be renamed out of the EDS umbrella, hEDS/EDS should be removed from EDS umbrella, rare types should each have more distinct names, etc)
How satisfied are you with the equity of research, education, awareness, and advocacy efforts from the EDS Society across all types?
Extremely Dissatisifed
Slightly Dissastisfied
Neutral/I don't know
Satisfied
Very Satisfied
Do you feel that the EDS Society has been transparent enough about their resource/funding allocation toward various types of EDS?
Yes, they have been transparent
Somewhat
Neutral/I don't know
No, they have not been transparent
What feels like the most important change you want to see for Road to 2026?
Do you want to submit this survey anonymously?
Yes
No
Submit
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