Are you active on Facebook? Like “Koolen-de Vries Syndrome Foundation” on Facebook to see notices of new newsletters, events, research, and more. If you have questions, would like to talk to a Board Member or would like to be connected with other families in your area, please contact us through our website, through Facebook or at Alayna@supportingkdvs.org.
The following support groups are not created or moderated by “Koolen-de Vries Syndrome Foundation.” Views expressed in the groups do not necessarily reflect the views of KdVSF.
This Facebook group is for the immediate families of individuals who have the diagnosis of Koolen-de Vries Syndrome (KDVS) previously known as 17q21.31 Microdeletion Syndrome.
Our PURPOSE is to offer encouragement by sharing our daily hopes and dreams, our challenges, our joys and sorrows as we raise our special children.
To maintain Safety, Privacy and our Personal Nature, we are limiting this group to immediate family members ONLY. This is a positive support group. We recognize that children and families are individuals, with diffferent parenting styles. Any comparisons we make among our children’s challenges, physical features, and behaviors are simply a natural way of sharing and these help us understand our own children.
KDVS Raw is a support site for families with KDVS. It’s a site that you can share the good times as well as your frustrations, anxieties, fears. We are a non-judgemental group, understanding that people vent in different ways. Any parent with a child with KDVS is allowed to join and we allow family members providing we have the permission from the parents of the child with KDVS.
This page is for the European families and parents/carers of individuals who have the diagnosis of Koolen-de Vries Syndrome (KdVS) also known previously as 17q21.31 Microdeletion Syndrome. We are all here to help one and other through the good and bad times. We can share our experiences and information to help each other.