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!
We Listened to YOU
To better understand how we can best support you as your child reaches important milestones, the Foundation recently emailed a survey to parents/guardians of individuals with CdLS who are age 14 or older.
We gained many valuable insights from this survey, including learning that over 85% of parents/guardians that responded reported that it is “extremely important” or “highly important” that the Foundation expands our support to individuals and families as they transition into adulthood.
Share a memory of your loved one
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