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.
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 across the United States and abroad.
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.
“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:
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.