Rare Beyond Compare ...


Was Formed

In 2011, the Global CMTC-OVM US Organization was formed solely by US members. The documents were filed by an attorney to legally become a non-profit 501 (c) (3) charity organization. Click here to learn more.


Where In The World?

We invite you to participate in building our world map. Click here to learn more. Click the world below to set your pin.


For your protection and security, the CMTC-OVM US website has received SSL certification. 


Genetic Research

The actual state of the research is that we are inviting participation from those with classic CMTC. The study involves providing a blood or saliva sample as well as a 3 mm diameter round skin biopsy. We plan to sequence both and look for differences. ~Dr. Millan Patel

Dr. Patel’s research study is currently on hold. We will provide status updates as we receive them.


 2018 Global


Annual Conference & Clinicals

to be held in…

We will be hosted at The Embassy Suites O’Hare Rosemont. 

There will be multiple medical disciplines represented, including our elite Medical Advisory Team. Again this year, free medical consultations will be available to those wishing to participate, a supervised space for the children to play, watch movies, etc., and an organized Family Event. Click here to learn more.

Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions. Become a Member
  • Donate

The most important part of our finances is the wonderful things we use our contributions toward. Such as our annual conference and family event, where families receive up-to-date medical information, a free medical evaluation, support from other CMTC-OVM US families, and the opportunity to begin a lifelong relationship with the organization. 

Click the donate button to complete your donation. We appreciate your contribution and thank you in advance. 

The Global CMTC-OVM US Organization is recognized under Internal Revenue Code section 501(c)(3), donations are tax deductible.