Establish Community.
Educate Families.
Enable Advocacy.

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 3,500 individuals with this rare genetic spectrum disorder.

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!

Let's Get Acquainted!

Participate in Research

Dr. Rowena Ng and research collaborators are actively recruiting for two studies to better understand the cognitive and behavioral profiles associated with the different genes causing Cornelia de Lange syndrome (CdLS). Specifically, she will be recruiting individuals with CdLS and age 10 years or older, and with a pathogenic variant in NIPBL or HDAC8 gene, a missense variant in SMC1A gene, or a clinical diagnosis of CdLS (i.e., those with a clinical diagnosis of CdLS but negative genetic test results). Families can indicate if they are interested in participating in Study 1 or 2.
 
If you are interested in learning more about the study or participating, please contact Dr. Ng at ngr@kennedykrieger.org or 443-923-4456.
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Professionals

The Foundation is a primary resource for professionals working in the fields of medicine, education, therapy and others.

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Families

The CdLS Foundation provides families and caregivers a wealth of services, support and information — most of which are at no cost.

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Research

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.

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Share a memory of your loved one

We invite you to submit a story to honor your child.
 
“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.” – Jane
Share your Story

Adult Transition

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.

 

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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.

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Give

Your gift provides unlimited opportunities to reach out, provide help and give hope.

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Take Action

From kindergarten classrooms to U.S. congressional offices, we are committed to educating the public about the syndrome.

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Volunteer with us

Parents, relatives and friends give their time and energy to help improve the lives of individuals with CdLS.

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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.”

Joanne Gersuk
Mother of Stephen

Questions? We have answers!

If you are in need of assistance, our Family Service Coordinators are here to help!

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