This is the fifth article of the Dutch, global and non-profit patient organisation for patients with CMTC and other vascular (bloodvessel) malformations, families and healthcare providers.
In this edition, we discuss personal stories. Sharing personal stories is greatly appreciated! This can be done anonymously, by name and only for members.
Our organisation was founded in 1997. The babies then are adults now. Over time, they have acquired important knowledge and experience, all of which are of great value for parents with young children with vascular malformations. Writing a personal story is an easy and quick way not only to help other people but possibly yourself as well.
Do you also want to share your personal story? Please contact us.
CMTC-OVM is a worldwide non-profit patient organization that aims to improve the quality of life of people suffering from vascular abnormalities (blood vessel abnormalities), such as CMTC (‘Van Lohuizen syndrome’), and stimulate scientific research on these disorders.
