Cornelia de Lange Syndrome Awareness Day

Cornelia de Lange Syndrome Awareness Day is dedicated to raising awareness of Cornelia de Lange syndrome (CdLS), a rare genetic condition. The day focuses on education, support for affected individuals and families, and improving understanding of the condition. It is observed on the second Saturday in May.

History of Cornelia de Lange Syndrome Awareness Day

Cornelia de Lange syndrome is named after Cornelia de Lange, a Dutch physician who described the condition in 1933. Awareness efforts have been supported for decades by patient organizations, families, and medical professionals who work to expand access to information and resources.

CdLS is a genetic condition that is often identified in infancy or early childhood. It can affect growth and development, and symptoms vary widely from person to person. Some individuals may have distinctive facial features, differences in limb development, and related medical concerns that require ongoing care.

Interesting Facts About Cornelia de Lange Syndrome Awareness Day

• CdLS is considered a rare condition.
• CdLS is linked to genetic changes, and variants in the NIPBL gene are commonly associated with the syndrome.
• Because signs and needs can differ significantly, care is often individualized and may involve a team of specialists.

Ways to Observe Cornelia de Lange Syndrome Awareness Day

Learn about CdLS using reliable medical and advocacy resources, and share accurate information to help reduce misunderstandings. Supporting reputable organizations that provide guidance, research support, and assistance to families can also make a meaningful difference.

If you know a family affected by CdLS, consider offering practical help in a respectful way, such as assisting with everyday tasks or helping them access community resources.

When Is Cornelia de Lange Syndrome Awareness Day in 2026?

Cornelia de Lange Syndrome Awareness Day is observed on the second Saturday in May.

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