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.


September 30, 2015 – CMTC-OVM US Board Meeting

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

January 28, 2016 – CMTC-OVM US Board Meeting

February 29, 2016 – Rare Disease Day

March 24, 2016 – CMTC-OVM US Board Meeting

July 22, 2016 – Family Day

July 23, 2016 – CMTC-OVM US Annual Conference



What Have We Been Doing?

Have a Heart, Run for CMTC-OVM US

The ladies on the Board of Directors, will be participating in a virtual 5K to raise awareness on Rare Disease Day – February 29, 2016. If you would care to join us, or would like to donate, please visit here: SHOW YOU CARE

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The 2016 Annual Conference preparations are falling into place. We will be hosted at the Courtyard Columbus Downtown in Columbus, Ohio.

Please visit the links under the 2016 Annual Conference tab above, to learn more about the conference, to make your hotel reservations, hotel info, and surrounding attractions.

You will also soon find under the same tab, information about Family Day, as well as information on the attending physician(s).

So please visit often, to learn more information about the conference as it becomes available.


      See you in the Buckeye State!

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
  • Rare Disease Day – Ellayna 1

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