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.

Building Awareness

One of the best ways to build awareness, is to be in front of the public. Throughout the year, the Global CMTC-OVM US Organization is represented at various conferences. Aside from our own conference, we attend the National Organization of Rare Diseases (NORD) Conference in Washington DC, and the Global CMTC-OVM NL member meeting in The Netherlands.

Most recently, we were represented at the American Medical Students Association annual conference in Arlington, Virginia; where we were invited by NORD, to advocate for our members in NORD’s exhibitor’s booth. This fall we will be attending the Family Medicine Education Consortium as an exhibitor, in Pittsburgh, Pennsylvania. AMSA report

Our goal is to attend more conferences to educate others about the organization, as well as to build awareness of the vascular malformations supported by the organization.



March 24, 2016 – CMTC-OVM US Board Meeting

April 2, 2016 – American Medical Students Association Annual Conference

May 26, 2016 – CMTC-OVM US Board Meeting

July 22, 2016 – Family Day

July 23, 2016 – CMTC-OVM US Annual Conference

October 28, 29, 30, 2016 – Family Medicine Education Consortium

November 12, 2016 – CMTC-OVM NL Member Meeting


What Have We Been Doing?


This is awesome news for our members/patients. We have been contacted by PALS, and they will be attending the 2016 annual conference, to share how they can assist you with travel needs.

As taken from their mission statement:
Patient AirLift Services is a 501(c)(3) nonprofit that arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially.

Visit their website: PALS

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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.

We will be visiting COSI for family day. COSI, is a dynamic Center of Science and Industry, inspires the scientists, dreamers, and innovators of tomorrow. Visit their website to have a look around. COSI

We are so pleased to announce, that Dr. Joan Tamburro will be joining us again this year as the attending physician. Her information is now available under the conference tab above.

We will be updating conference information as it becomes available. Please check back often.


      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
  • Denim Dash 5K Run


On March 21, 2015, our Secretary – Brandy James and Fundraising Chair – Andrea West, will be participating in the Denim Dash. This is a national run/walk 3.1 miles to raise money and awareness for the rare disease world. It’s a virtual race, so participants have the flexibility to engage wherever, and whenever is most convenient for them!

The Denim Dash 5K Run/Walk was created through collaborative efforts between Orphan Drug Solutions and Global Genes™ as the first annual virtual 5K event. This virtual 5K is designed to support and raise awareness for patients, family, and friends of the Rare Disease Community, while also helping enrich and sustain the educational programs created by Global Genes! The event runs from March 21st through March 29th, 2015.