Let’s Get Acquainted!

There are an estimated 30,000 people living with CdLS in the U.S. So far, we only know about 2,800 of you — and we want that number to grow.

The CdLS Foundation is a vibrant community of families, researchers, volunteers and professionals. Family support is at the center of everything we do. We invite you to ask us for support. Share your experience with a family in need. Help us improve the lives of those living with CdLS, Raise awareness across the United States. Stand with us – #CdLSStrong.

Who should join the CdLS community?

  • The parent whose child is diagnosed with the syndrome.
  • An individual diagnosed with CdLS.
  • The grandparent whose concern extends to the well-being of their child, not just her grandchild.  
  • The family friend who wants to learn more about CdLS and how they can help.
  • The sibling who wants to know what to expect in the future.

We invite you to be a part of our CdLS community.