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 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!

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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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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.

Your Support Changes EVERYTHING!

Your charitable contribution to the Cornelia de Lange Syndrome Foundation gives individuals with CdLS and their families more than just a place to call for information. Your gift helps connects families who share vital, valuable knowledge with each other. It also puts people in touch with experts from a universe of medical, educational and therapeutic specialties.

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!