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CANADIAN CMTC FOUNDATION

Welcome to the Canadian CMTC Foundation!

 "We know what we are but not what we may be"

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

patient privacy is always at the forefront of everything that 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 and 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 safety, security and support.  Working with the United States CMTC organization we have developed just that and we would like any of our members who are are interested to please join us at anytime if they have questions or are looking for somewhere that they can interact with others in the same position navigating this same rare disease world. We welcome you at the ICE HUB!

Quarterly Newsletters and Board Meetings will be held on the following dates:
  • November 17, 2019

  • February 23, 2020.

  • The Canadian CMTC Foundation Annual General Meeting September 28, 2020

 

Our new logo is finally finished and we are so very happy to share it with you!

The Canadian CMTC Foundation has partnered with the Rare Disease Foundation in order to bring Cobourg and surrounding areas the Peer 2 Peer Support Services for individuals within the Rare Disease Community.  We will be holding weekly parent support groups online on Tuesdays at 2:00pm on the Group Chat. Everyone is welcomed and encouraged to join if they would like more information or may be just needing some support.  We will also be holding monthly family support meetings starting in November on Wednesday evenings from 6pm to 8 pm. Please send a message in the chat if you are interested in joining.  We look forward to seeing everyone!!!

Mission:

The Canadian CMTC Foundation seeks to create a forum in order to encourage connections of individuals who are affected by vascular maformations like CMTC (Van Lohuizen Syndrome), and to stregthen the genetic and scientific research of rare vascular conditions.

Vision:

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

Our Online Store is Open!

If you want to help us raise awareness or just want to help us with our fundraising, check out our new online store.  All the proceeds from this fundraising campaign go directly to bringing CMTC-OVM families together, research raising awareness.

Hand just like Ireland afflicted with CMTC