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!
Professionals
The Foundation is a primary resource for professionals working in the fields of medicine, education, therapy and others.
Families
The CdLS Foundation provides families and caregivers a wealth of services, support and information — most of which are at no cost.
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.
National Family Virtual Conference Week
National Family Conference will be held virtually on June 24 – June 25, 2022, from the comfort of your own homes. As we try to meet the needs of as many families as possible, this year, in addition to Conference we are offering pre-conference workshops. These small workshops address topics of interest of specific portions of our CdLS community. For example, there will be a workshop just for families where CdLS is a new diagnosis, another just for families with a child transitioning out of high school, and a workshop just for families of those prescribed psychiatric medications. These specialized pre-conference workshops allow a small group of families to discuss issues of concerns with professionals as well as other parents who have shared a similar journey.
Share a memory of your loved one
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.
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.
Give
Your gift provides unlimited opportunities to reach out, provide help and give hope.
Take Action
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.”
Joanne Gersuk
Mother of Stephen