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.

Where In The World?

We invite you to participate in building our world map. You may share as much, or as little, information as you wish. You may remain completely anonymous. We ask that you at least share your general location and your vascular malformation diagnosis. Click the world below to set your pin.

CMTC-OVM US does not add your information. Your participation is strictly your decision and responsibility.
This mapping service uses a secure socket layer to encrypt data, providing security for your benefit.

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For your protection and security, the CMTC-OVM US website has received SSL certification. Secure Sockets Layer (SSL) is the security technology for establishing an encrypted link that ensures all data passed between the web server and browsers remain private and integral.

Calendar

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Genetic Research

The actual state of the research is that we are inviting participation from those with classic CMTC. The study involves providing a blood or saliva sample as well as a 3 mm diameter round skin biopsy. We plan to sequence both and look for differences. Thus far we have 2 participants from Canada and one from Holland, we need 2 more to begin.” ~Dr. Millan Patel

To participate in this study, consult your Vascular Anomalies Team or Dermatologist to schedule the biopsy and make arrangements for the specimens to be sent to Dr. Patel.

You may contact Dr. Patel and his collaborator directly:

Dr. Millan Patel

Dr. Anna Lehman

  Global CMTC-OVM US 2017 Annual Conference & Clinicals

memphis mapIt’s that time of year again, and conference preparations are underway. We will be hosted at the Courtyard Memphis Airport Hotel in Memphis, Tennessee.

Please visit the links under the Annual Conference tab above, to learn more about the conference and to make your hotel reservations. Registration is available now!

We are trying a new concept for our Family Event this year. Due to it always being on a travel day for most participants, the board of directors has decided to host a pizza/pool party at the hotel. This will give parents a chance to relax while not having to plan dinner. As well as give everyone the opportunity to play in the pool and get to know one another.

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

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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
  • DCMO (Diffuse Capillary Malformation with Overgrowth)

DCMO, as described by Margaret S. Lee et al, has been proposed as an independent entity within the wide spectrum of vascular abnormalities associated with overgrowth. It is distinguished by erythematous-purplish stains, with a narrow network morphology than can go with a more homogeneous or plain macules. It has a diffuse distribution, extending minimum beyond one anatomic region, and neither atrophy nor ulcers are present. It has been observed a midline sharply demarcation on the abdomen, but never on the back. The associated overgrowth is a diffuse proportional enlargement of a body region, most commonly of a limb, that does not progress, accordingly vascular or infectious complications will not take place. The skin vascular malformations frequently lighten over the first several months, however less intense than CMTC.
This recently proposed designation describes patients with an extensive, diffuse, reticulate capillary malformation and variable, but proportionate, hypertrophy without any major complications. A reticulate capillary malformation is defined as network-like, blotchy, nonuniform in color, and without distinct borders. This is in contradiction to the darker “geographic” stains observed in KTS. These patients do not fit the diagnostic criteria of the other disorders marked by capillary malformations and overgrowth such as KTS or Parkes-Weber syndrome. Patients still require periodic evaluation to monitor for leg length discrepancy. They exhibit normal neurologic development and proportionate overgrowth rather than progressive, disproportionate symmetry.

Lee MS, Liang MG, Mulliken JB. Diffuse capillary malformation with overgrowth: a clinical subtype of vascular anomalies with hypertrophy. J Am Acad Dermatol. 2013;69:589–594.

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