Nov. 9, 2015
TOPIC: Featured News
Posted by Christina Jensen
The CMTC-OVM is an organization based in The Netherlands that provides information and other services to those affected with, or working on, van Lohuizen syndrome, which is also known as cutis marmorata telangiectatica congenita (CMTC-OVM). On its web site and in its print materials, the organization provides information in English and German, as well as Dutch. CMTC-OVM, first described by a Dutch pediatrician in 1922, is a skin affliction that produces a marbled skin and is sometimes associated with other conditions. The main goals of the organization are to increase the well being of those affected by the disease and stimulate research into the causes and treatment of CMTC-OVM.
1.) What does it mean to you personally to be a patient organization serving the rare community?
It means a lot to us to be a patient orgnanization serving the rare community! For me, it is a personal mission in my life to serve the rare community.
2.) What do you find your patient community values most from your organization?
We find that our patient community most values the information that we provide as an organization. We understand that our community also truly values the connections that we can provide to other patients and families.
3.) What are some of the challenges your organization has faced?
A challenge we are continuously conflicted with is increasing our visibility. As a rare disease organization, to the vast majority, you are not “interesting”. We are also faced with the challenge of raising sufficient funds for the resources we need to meet our objectives.
4.) Whats been your most successful awareness campaign and/or fundraising event?
There have been no awareness campaigns or fundriasing events that have particularly stood out as being successful but we do get a subsidy from the Dutch Government that is extremely helpful in working towards our mission.
Leusdan, 3831 PC The Netherlands