The Cornelia de Lange Syndrome (CdLS) Foundation provides a host of services for anyone touched by this little-known genetic syndrome and other isolating conditions.
If CdLS is Part of Your Life, We’re Here to Help
CdLS occurs in approximately 1 in 10,000 live births and the CdLS Foundation is honored to currently serve over 2,800 individuals with this rare genetic syndrome.
We also aim to reach the thousands more who live without a diagnosis and/or are unaware of services available to them. If you or someone you know would benefit from our many support services, please let us know!
Share a Memory of Your Loved One
“As universal as grief is to the human condition, it is also unique and intimate to each individual…Losing a child is the most devastating passage parents will experience in their lifetime, but we do not have to endure it alone. We can support, love, and learn from one another, and eventually, tomorrow will be a better day.”
The CdLS Foundation has created a memorial site to honor those with CdLS who have passed away.
Please take a moment to share a story of your loved one with our community.
Ask The Experts
The Foundation can put you in touch with a caring group of 50 medical and educational specialists with experience treating individuals with CdLS. These experts are here to help parents, caregivers, healthcare providers and teachers enhance an individual’s health, development and education.
There are a variety of ways you can be part of the community – whether it is through a fundraiser or volunteering – the options are endless.
The Foundation staff is the most caring and dedicated group of people who are always ready to listen or point us in the right direction when we desperately need help.”
Mother of Stephen