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 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.

 image

Calendar

calendar

stars-tiny

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

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.

 

20160723_100256

 

 

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
  • Calendar

January 19, 2017 – CMTC-OVM US Board Meeting

April 27, 2017 - CMTC-OVM US Board Meeting7000 rare diseases pic

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