"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."
A sampling of the many activities in which we're involved. With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.
On the 2nd of November 2013 we have organised again our annual member meeting in the Netherlands with eg. a series of parallel sessions. The number of participants was this year 80 from Australia/Switzerland, Belgium, Germany, Iraq, Japan/Dubai, the Netherlands and the USA.
On July 14, 2012, we organized near Washington, DC for the member meeting of our members in the USA and Canada. Many members have used the opportunity for free medical diagnosis by Prof. dr. van Steensel.
On Saturday the 22nd of June it was time for the Dutch CMTC-OVM family day again! This year we did select the Efteling again and our participants had another great day!Read more
On July 5, 2014. the CMTC-OVM US Organization held their annual conference. This years conference was held in St. Louis Missouri for the second consecutive year. The conference was held at the conveniently located Hilton St. Louis Airport hotel, adjacent to Lambert St. Louis International Airport (STL). There were registered participants from 7 states and 3 countries in attendance this year.
The general session was opened by Becky Gallis, CMTC-OVM US President. Following a brief welcome and time of orienting the group to the location of the medical evaluations, things were underway with the first presentation.
The funding of our project Youth Education Rare Diseases is a big step further thanks to the participation of Fonds NutsOhra! The total project budget is € 113.665 and already 44,200 (appr. € 39%) is financed! What sponsors want more to participate in this project with very high visibility opportunities with some 11,000 Dutch schools? Our immediate target group consists of 800,000 pupils and 1,500,000 parents!
CMTC-OVM Canada is formally a fact! The Canadian Government has approved the establishment of this nonprofit organization! Now begins the adorning of the organisation where they can use many concepts and parts of the global and USA CMTC-OVM organizations.
The annual worldwide CMTC-OVM members meeting in the Netherlands has been moved to Saturday 15 November 2014. On Friday night, november 14, we receive our foreign guests in a Dutch atmosphere.
At this time, we are expecting already people from 5 countries. More information and registration will be available in September.
This year promises to be a very special event ...
President Lex van der Heijden had a personal invitation received from Mr. Ole Moesby (Danish Ambassador in the Netherlands) and Prof. Dr. Theo van Achterberg (Radboud University Medical Centre, Netherlands) to attend a presentation about washing without soap. Theo has performed with his team a study of a new method in which the usual way of washing patients with soap and water is replaced by disposable wipes.
There is still time to register for the annual conference in St. Louis, Missouri. The agenda contains an indepth presentation by Dr. Suzanne Pasmans, as well as our very own Brandy James MA. MS. We also want to hear from you during this conference; therefore, there will be question/answer periods throughout the general meeting. The following is the tentative agenda:
10:00 – 10:15 Welcome
10:15 – 11:15 Prof. Dr. Suzanne Pasmans
11:15 – 12:15 Brandy James MA. MS.
12:15 – 1:30 Lunch
1:30 – 2:00 CMTCOVM-US - Rebecca Gallis
Financial report - Tabatha Broussard
Fundraising report - Andrea West
2:00 – 2:30 CMTCOVM Worldwide - Lex van der Heijden
2:30 – 3:15 Social Media - Lydia Handzova
3:15 – 4:00 Brainstorming - All Members
Your private clinical evaluations will be held during the afternoon.
See you in St. Louis ~