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Who We Are

We are a nonprofit 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.

Building Awareness


The t-shirt campaign is going quite nicely. If interested in purchasing a shirt to help support a worthy cause, please click on the picture above to place your order. Check out how they change color!

Coming Up

February 28, 2015 – Rare Disease Day

March 7, 2015 – CMTC-OVM US Board Meeting

March 21, 2015 – Denim Dash 5K Run for Rare Diseases
Secretary Brandy James & Fundraising Chair Andrea West

May 16, 2015 – CMTC-OVM US Board Meeting

July 10, 2015 – Family Day
More info to follow later

July 11, 2015 – Annual Conference in Atlanta, Georgia

July 11, 2015 – CMTC-OVM US Board Meeting

July 25, 2015 – Fundraiser “Dancing With The Diva’s”



What Have We Been Doing?

Denim Dash 5K Run


2014 Dutch – International Meeting

NORD 2014


The personalized hotel reservations link for the 2015 annual conference, is available until June 18, 2015. Please click on the picture below to make your reservation.


If interested in booking 3 days prior and/or post the conference date, at the same reduced rate, please call: 1-800-Marriott. You must inform the receptionist of the hotel; Atlanta Marriott Century Center/Emory Area, and that you will be joining the CMTC-OVM US Annual Conference.


The CMTC-OVM US Annual Conference preparations are moving right along. Please click on the button above to complete your registration.

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
  • 2015 Attending Physician – Research

We are honored to have Dr. Millan Patelm_patel_2013_sized joining us at this year’s annual conference in Atlanta, Georgia. Dr. Patel is the Clinical Assistant Professor in the Department of Medical Genetics at the University of British Columbia. He obtained his Masters in Genetics and MD degrees at the University of Alberta; and, completed residency training in Medical Genetics at the Hospital for Sick Children in Toronto.

Dr. Patel has been published in multiple medical journals for his various research projects. He was recognized with the Department of Medical Genetics Clinical Teaching Award in 2012, for creating an environment that empowered clinical trainees to utilize biotechnology in improving patient care.  The UBC Clinical Faculty Award for Excellence in Clinical Teaching was awarded to him in 2013. And, on March 5, Dr. Patel was presented with the 2015 Rarity Award for Scientific Leadership in the field of rare diseases.

Primary Area of Research – Genetics & Health
Secondary Area(s) of Research – Immunity in Health & Disease

Dr. Patel is also the research director of the Rare Disease Foundation in Vancouver, BC. Visit their website at http://www.rarediseasefoundation.org/