1. Welcome to this survey.

This survey is being conducted by the ILC/Canadian Ehlers-Danlos Foundation and the Regroupement québécois des maladies orphelines (Quebec Coalition of Orphan Diseases).

Thank you for participating in our survey. Your feedback is important.

Any person with a definite or probable diagnosis of EDS and living in Canada can complete this survey.

It aims at collecting information on your needs and your priorities in relation to your experience as a person affected by Ehlers-Danlos syndrome or as a parent of an affected child.

This will help us determine where to put our efforts to better support people affected with EDS and their families, as well as informing the clinicians and researchers in this field about your needs and priorities.

There are two different surveys: 

A)     SURVEY FOR A PERSON AFFECTED BY EDS (14 yrs and older)

B)     SURVEY FOR A PARENT OF ONE OR MORE AFFECTED CHILDREN (children below 18 years of age)

(if you are affected yourself and a parent of affected children, you can complete both surveys)

This survey is anonymous. We do not collect personal information, nor computers' IP addresses, so respondents cannot be traced.
* We thank The LAM Foundation for sharing their survey with us.