"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
The Danish Embassy in the Netherlands helps us with finding find new contacts in the field of rare diseases and increasing our visibility in Denmark. We have a few members in Denmark but hopefully we can reach more patients and their families in this way and help.
On Saturday, November 15, 2014 we organize our annual member meeting in the Netherlands (near Amersfoort in Leusden). The participants can also now choose from several parallel sessions that cover a wide range of topics.
For the children there is again a separate team and space available in which to do something for practically all ages. Members can get a free diagnosis by various professors.
For our foreign members we are starting already on Friday evening, November 14, with a snack and a drink for an informal introduction.
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!