Rare Beyond Compare ...

How CMTC-OVM US 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; this was paid through a loan from one of our families.

From that point forward, the CMTC-OVM US Organization has been a private entity governed by no other organization. We operate by the guidance of a board of directors. And, all financial support is received through our members, donors, and fundraising projects.

Where In The World?

We invite you to participate in building our world map. You may share as much, or as little, information as you wish. You may remain completely anonymous. We ask that you at least share your general location and your vascular malformation diagnosis. Click the world below to set your pin.

CMTC-OVM US does not add your information. Your participation is strictly your decision and responsibility.
This mapping service uses a secure socket layer to encrypt data, providing security for your benefit.



For your protection and security, the CMTC-OVM US website has received SSL certification. Secure Sockets Layer (SSL) is the security technology for establishing an encrypted link that ensures all data passed between the web server and browsers remain private and integral.




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. Thus far we have 2 participants from Canada and one from Holland, we need 2 more to begin.” ~Dr. Millan Patel

To participate in this study, consult your Vascular Anomalies Team or Dermatologist to schedule the biopsy and make arrangements for the specimens to be sent to Dr. Patel.

You may contact Dr. Patel and his collaborator directly:

Dr. Millan Patel

Dr. Anna Lehman

  Global CMTC-OVM US 2017 Annual Conference & Clinicals is in the books!

The annual family event and conference has come and gone for another year. This year the conference was held in Memphis, Tennessee, and it was a huge success!!! We had 8 amazing, informative presentations, a Q&A session with the physicians titled “What’s on Your Mind” that answered multiple questions, and a powerful “What’s Your Journey” session that was emotional, personal, and an extremely moving experience.

It is fascinating to report we had members in attendance from 11 states, and 3 countries! Sadly, we had 3 families that were unable to attend due to last minute circumstances. But, we look forward to them attending in the future.

It was HOT – HOT – HOT in Memphis! We could have officially written a new song titled, “Melting in Memphis!” It was 97 to 100 degrees Fahrenheit (approximately 36 degrees Celsius) with the heat index around 107/110. Click here for the full report.

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
  • 2017 Family Medicine Education Consortium

The Family Medicine Education Consortium annual meeting was held in Cleveland, Ohio, on November 10 & 12, 2017. The theme of this year’s FMEC meeting was, “Harmonize the Voices for Better Health for All.” This year the FMEC community celebrated their 35th anniversary. Today is a time when medicine is fraught with challenges from inside as well as outside of the medical profession. FMEC is an incubator, where they create multi institutional teams that support cost-effective, quality improvement initiatives.

As this meeting is full of 500+ physicians, residents, fellows, and 300+ medical students – it was a great opportunity to share what the Global CMTC-OVM US organization offers for our members. As exhibitors at this event, Ellayna and Bec were excited to educate these medical professionals on our world of rare diseases.

We talked for 2 days about CMTC and other vascular malformations. Of course the normal phrase was, “I have never heard of these diagnoses.” And of course, we grabbed the opportunity to share and build awareness!

Ellayna working her magic!