Who We Are
We are a global non-profit 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.
The CMTC-OVM US Organization provides an annual conference, where families can attend, receive evidence-based & up-to-date informative presentations by the leading experts in the country. Also available are clinical evaluations, free-of-charge, by the attending physicians.
The Board of Directors works diligently to make every effort to accommodate as many members as possible. Therefore, the annual conferences are held in different locations across the United States.
In addition to the annual conference, a Family Day is planned the day before the conference, to allow everyone the opportunity to get to know one another. This is an excellent time for the kids (of all ages) to play and realize they are not making this journey alone!
Moreover, we have an active closed group on Facebook, giving patients, parents, and caregivers the freedom to ask questions, and sometimes vent when the journey follows an unfortunate path. Facebook link
CMTC-OVM US shares the same goals as the CMTC-OVM NL, a not-for-profit patient organization in The Netherlands. While neither entity exercises any financial or other organizational controls over the other, the organizations intend to cooperate in the furtherance of their mutual objectives to promote the welfare of individuals who have vascular malformations such as CMTC; and, to encourage research in respect to vascular malformations such as CMTC.
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.