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:
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.
January 19, 2017 – CMTC-OVM US Board Meeting
May 6, 2017 – Canadian CMTC Foundation Conference
July 2017 – CMTC-OVM US Annual Global Conference
September 14 & 15, 2017 – Global Genes Rare Patient Advocacy Summit
October 16 & 17, 2017 – NORD Rare Disease & Orphan Products Summit
November 3, 2017 – CMTC-OVM NL Conference
November 10 & 11, 2017 – Family Medicine Education Consortium