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Organization Information

Cornelia de Lange Syndrome Foundation


The scariest day of your life is hard to forget. For Renee, it was months. Her daughter was born with CDLS, a rare disorder. The CdLS Foundation was her lifeline, offering information to help navigate the medical care for her daughter and emotional support

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Success Story

When we were first told that our baby had Cornelia de Lange Syndrome, we were crushed. My wife and I had no idea where to turn. Our family, our friends, even our pediatrician, had never heard of CdLS. Would our child eat, walk, live?

Then we searched the Internet and found the CdLS Foundation's website. They had so much information about the syndrome. We read about treatment, education, everything. We saw pictures of other children and cried both tears of sadness, but also tears of joy that someone else knew what we were going through. We weren't alone!

When we called the Foundation office, the family service coordinator was wonderful. She listened to our concerns, gave us help and hope; she even put us in touch with another family.

She also told us of a gathering of families in a nearby city. Wow! It was probably only a dozen families, but when we met them, we felt like we had known them forever. We shared stories, laughter, and some tears. We left with everyone's number and many of those people are good friends now, almost family.

Thank you CdLS Foundation!