Share your story

Share your story


CdLS is a long journey; sometimes difficult and dark but often you arrive at a sunny place. Talking about it helps you cope with the journey. Share your stories and hear those of others.

Social Media (Facebook, Twitter, ...)

Many of our groups have discovered the good things of Social media. You can make friends, tell your story and read, laugh or share your emotions. Sometimes your story could get noticed and you might be invited to tell it to a bigger audience.

Here we present news from the worldwide Cornelia de Lange syndrome community. We invite everybody to come here and tell us about your community events, you community milestones.

For personal stories we recommend that you go to your personal dashboard and add them there, if you want they will show in this blog after you completed your story 



There is a great work of volunteer experts completed. The first international agreed collection of all we know about CdLS ... Read more…

Website changed

The website should be 'calm' and easy to read, with less distractions. Please read ... Read more…

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.