For families · The research list

Families help move the science forward.

If someone in your family has Cornelia de Lange syndrome, then this page is for you. We’ll contact you when a study, trial, or registry effort is looking for families like yours. You decide what to take part in. Joining takes two minutes and doesn’t commit you to anything.

  • Studies and clinical trials recruiting families
  • Surveys about daily life with CdLS and related disorders
  • Registry and natural history study updates
For families

Join the research list

Step 1 of 4 · About you

About you

The research list is separate from the newsletter. We’ll only contact you about research opportunities (plus the newsletter, if you tick that box), and you can ask us to remove you at any time. Read our privacy policy.

Just want updates?

Join the newsletter

General news on our research, progress, and plans, for anyone who wants to follow along. This won’t add you to the research list.

Unsubscribe anytime. Read our privacy policy.