Rare Beyond Compare ...

How CMTC-OVM US Was Formed

In 2011, the 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.



Building Awareness


The t-shirt campaign is going quite nicely. If interested in purchasing a shirt to help support a worthy cause, please click on the picture above to place your order. Check out how they change color!


July 10, 2015 – Family Day

July 11, 2015 – Annual Conference in Atlanta, Georgia

July 11, 2015 – CMTC-OVM US Board Meeting

July 25, 2015 – Fundraiser “Dancing With The Diva’s”

September 30, 2015 – CMTC-OVM US Board Meeting

October 21 & 22, 2015 – NORD Rare Diseases & Orphan Products Breakthrough Summit


Understanding Coagulopathy in Vascular Anomalies Webinar

Click here to read the notes from this informative webinar.


What Have We Been Doing?

New fundraising project introduced by one of our members, Linda Clouse. Click on the beautiful bracelet that has been designed specifically for the CMTC-OVM US Organization, to order yours today.

CMTC-OVM US bracelet

2015 Conference and Family Day Highlights

conference photoFamily Day and the Annual Conference have come and gone; but, the excitement and the memories will continue as we plan for next year.

The benefits of attending an annual conference are sometimes hard to express. You make new friends, meet those you have communicated with on Facebook, and have the chance to be reacquainted with those from the past. And the opportunity to watch the kids interact with others just like them, is unbelievable. They actually have the opportunity to realize they are not alone in the world of rare diseases.

Click here to read 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
  • Group Album

Group Photos