Patient Survey

We are pleased to partner with ILC to continually advocate for better care for chronic pain, Ehlers-Danlos Syndrome and other associated conditions such as Chiari and Syringomyelia. We are pleased to offer this opportunity to make your voice heard by participating in the ILC survey below. Please see their remarks as well.

Thank you in advance for your contribution!



Please take this survey titled "Understanding healthcare barriers for patients with Ehlers-Danlos Syndrome, hereditary connective tissue disorders, and complex chronic pain in Canada" Your feedback is important!


The ILC has been advocating for its cause for more than eight years, yet we continue to see gaps in care. As a result we put together a survey, giving voice and quantifiable data to the neurological and neurosurgical needs in the connective tissue disorder patient population.


We can not stress enough the importance of you taking the time to fill this out. It is critical that we have benchmark data to use in our advocacy efforts both provincially and federally. Help the ILC help you!


Should you need assistance in filling out the survey, please send a response to this email and you will be connected with someone that can help.


Thank you 


Sandy Smeenk

Executive Director


Click here to access the ILC survey 


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Disclaimer:  The material presented on this site is for information ONLY and does not constitute medical advice.  For diagnosis and treatment options please consult your healthcare provider.  The Canadian Chiari Association (CCA) does not recommend or endorse any one treatment, procedure or product.

The CCA aims to increase awareness of Chiari Malformation across Canada and to provide its members with information to help them in their daily lives.  As such, this site may contain third party links and/or information available as PDFs.  The CCA takes no responsibility for the accuracy or currency of these sources.  Visitors who use the information on this site do so at their own risk.