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Welcome to the Canadian CMTC Foundation!

 "A good physician treats the disease; the great physician treats the patient who has the disease".

We want to take a moment to thank you for connecting with us and to let you know that we are here to answer any questions you have. We want to offer you all the support you may need. Go to our organization tab on the menu bar and you can access our contact information.  We are always happy to hear from others within the CMTC-OVM family.

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patient privacy is always at the forefront of everything we do. 


When we began this not for profit our main goal was only to be a resource for families in need.  We found ourselves with the birth of our daughter Ireland, navigating the rare disease world and being swallowed up by opinions and ideas that had nothing to do with the condition that she had been diagnosed with.  We thought we would do our part to help other families who found themselves in similar position, not feel so alone and isolated. We wanted to help pave a path to the answers so desperately needed.  Along the way we have run in to many obstacles and successes, but one thing often reiterated is that families need a space that provides safety, security and support.  This platform is for patients and their families and/or caregivers and we hope you join us!


The Canadian CMTC Foundation seeks to create a forum to encourage the connecting of patients, families and caregivers affected by vascular malformations like CMTC (Van Lohuizen Syndrome). Our goal is to strengthen the genetic and scientific research of rare vascular conditions.


Creating connections with patients, families and caregivers within the rare disease community.

Quarterly Newsletters and Board Meetings will be held on the following dates:
  • May 1, 2021.

  • The Canadian CMTC Foundation Annual General Meeting September 24, 2021.

  • December 1, 2021.

  • February 1, 2021.


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