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.



September 22 & 23, 2016 – Global Genes Rare Patient Advocacy Summit – Huntington Beach, Ca

October 17 & 18, 2016 – NORD Rare Disease & Orphan Products Breakthrough Summit – Arlington, Va

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

November 12, 2016 – CMTC-OVM NL Member Meeting – Leusden, NL


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

2016 Conference and Family Day Highlights

20160723_125337Once again, Family Day and the Annual Conference have come and gone; but, the excitement and the memories will continue as we plan for next year.

It can be hard to express the benefits of attending an annual conference. You find others created just like you or your child, make new friends, meet those you have communicated with on Facebook, and have the chance to be reacquainted with those from the past. When you watch children experience this… it becomes an emotional, fulfilling encounter in the world of rare diseases.

Click here to read the full report.


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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
  • Other Organizations

Canadian Organization

European Organization