Rare Beyond Compare ... Click here to learn more

Who We Are

We are a nonprofit organization whose activities are aimed at the well-being of people who suffer from vascular malformations such as CMTC (Van Lohuizen Syndrome) and to stimulate the scientific research of such conditions. Objectives of the CMTC-OVM US organization are focused to provide our members with knowledge, medical support that can enhance their confidence and independence, and to empower them with the skills to meet their individual needs.

Coming Up

December 4 – JRAZZO’S Wine & Dine Fundraiser in Indianapolis, Indiana

January 10 – CMTC-OVM US Board Meeting

February 28, 2015 – Rare Disease Day

July 11, 2015 – Annual Conference


What Have We Been Doing?

2014 Dutch – International Member Meeting

NORD 2014

2014 Annual Conference and Family Day


Welcome to the new CMTC-OVM US Website!  Take some time to make yourself at home.

Be sure to visit the Board of Directors page and get to know a little about them.

The CMTC-OVM US Organization will be represented at two upcoming conferences; NORD in Washington DC, and the CMTC-OVM Member Meeting in Leusden, The Netherlands.

There are also currently four fundraising events being organized.  Check back to read the event organizers’ reports.

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
  • 2015 Annual Conference

imageThe 2015 Annual CMTC-OVM US Conference will be held in Decatur, GA, on July 11, 2015. We will be hosted at the Atlanta Marriott Century Center located off I-85, just minutes from downtown. We will receive complimentary parking and shuttle service, and a guest room rate of $99/night. Visit the hotel site at: http://tinyurl.com/naruj3s

The general session will include informative presentations from: CMTC-OVM US President – CMTC-OVM NL President – Physician – Counselor/Family Educator. In addition, there will be clinical evaluations by the attending physician; as well as, a follow-up consultation with the attending counselor/family educator.

The board will also be organizing a family day, where all families can come together for a day of fun. Registration for the conference and family day will be available in January. At that time, information for your hotel reservations will be supplied.