Cornelia de Lange Syndrome (CdLS) is a genetic disorder affecting 1 of every 10,000 births. CdLS is characterized by slow growth patterns before and after birth,

Our Mission

To provide the CdLS Community with a strong resource of support and awareness.

Attention: Members of our CdLS Community

We are in search of stories to share. We would love to feature your loved one's story.

 

Why share? Your story is just one form of potential support for another family. Sharing your experiences such as what makes you appreciate every moment with your child, or how you have handled complications that come along with Cornelia de Lange Syndrome, helps other family's know they are not alone. In addition to strengthening the sense of community, sharing your story helps spread awareness to other's about CdLS by providing different perspectives.

What to share? For examples of other stories, click here or visit our "Meet the Kids" page. It is up to you how much or how little you want to share. We understand that some things should remain personal, so we will never ask you to share medical information or anything outside of your comfort. You share anything you want the world to hear!

How to share? To share, just click here and fill out the short form. Within 48 hours, you will receive an email from Mikayla with more information.

CdLS Awareness' Latest project

In our new "A Caregiver's Perspective" Section, loved one's of those living with CdLS have the opportunity to share stories, experiences, and thoughts with the community. This is a great way for parents and caregivers to advocate for those they love. Email us if you would like to help build an even stronger CdLS Community by sharing your insights!

 

Also, we are always working to expand our "Meet The Kids" Section. You can submit a story by clicking here.

Let us know if you have any if you have any feedback for us or ideas for how we can better help the CdLS Community. We would love to hear from you! 

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