By: Family Services
Whether the words “Cornelia de Lange Syndrome” are new to you or have been the focus of many hours of exploration/investigation/contemplation, we welcome you to our Foundation. However you choose to contact us — by phone, letter or email — you may be filled with a multitude of questions, uncertainties, fears and hopes. We are here to meet these concerns and provide you with the support and information necessary to make decisions with greater comfort and assurance.
Now that you have found us, you never need to feel alone.
Family Support
As the Family Service Coordinators, we are pleased to answer your questions personally and offer individualized support when you call or write. No question is too small or too complex. Through our extensive contact with families associated with the Foundation, we have built a solid core of knowledge and understanding about CdLS. We have the ability to connect you with other parents, medical and educational specialists, local and national resources, and furnish you with publications addressing the host of issues affecting your loved one.
Often families are surprised to learn there is another child with CdLS living in their communities.
We have a wide-ranging network of volunteers called Regional Coordinators (RCs) comprised of parents of children with CdLS in your state who are able to reach out and listen to you, help you identify local specialists, and connect you with other families. Your RC may also host an informal gathering of families and relatives, where you can meet others who understand your concerns and are willing to share their experiences.
These services are available at no cost. We need only your permission to release your name and contact information to your RC.
CdLS Medical and Professional Experts
Raising a child with CdLS, you may be confronted with numerous concerns regarding your child’s health, development or education.
Fortunately, there is a caring group of volunteer specialists, many of whom have met hundreds of children and adults with CdLS, available to help.
These professionals can be accessed through the “Ask the Doctor” form on our website or by contacting us at the Foundation office. The answer to your question is often literally at your fingertips.
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