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!
The Foundation is a primary resource for professionals working in the fields of medicine, education, therapy and others.
The CdLS Foundation provides families and caregivers a wealth of services, support and information — most of which are at no cost.
Through a variety of research programs and activities, the CdLS Foundation plays a major role in advancing clinical and basic scientific knowledge about the syndrome.
The CdLS Health Care Notebook
The CdLS Health Care Notebook is the first of multiple tools from the CdLS Foundation that makes accessing and coordinating care more manageable. It provides an easy way to keep track of important information so you can find it and share it any time you need. You can update the notebook in real-time, with the ease of a smartphone or any electronic device.
Share a memory of your loved one
Visit the Adult Transition page. Learn about the six core areas of transition. The six core areas are education, socialization, medical options, legal issues, living arrangements and government resources. Gain insight from other parents who have already gone through the process. Find resources that can help you and your family prepare for your loved one with CdLS becoming an adult.
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.
Your gift provides unlimited opportunities to reach out, provide help and give hope.
From kindergarten classrooms to U.S. congressional offices, we are committed to educating the public about the syndrome.
Volunteer with us
Parents, relatives and friends give their time and energy to help improve the lives of individuals with CdLS.
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