NATIONAL DAYAWARENESS

Cornelia de Lange Syndrome Awareness Day

Cornelia de Lange Syndrome Awareness Day isn't about diagnosis — it's about dignity. About showing up, showing support, and pushing for change.

MAY9

Saturday, May 9Second Saturday in May

Roots: Established in 1989 by the Cornelia de Lange Syndrome Foundation
Vibe: Community-focused and supportive
Also on May 9: Birth Mother’s Day · Wanna Have a Catch Day · Stamp Out Hunger Food Drive Day
Hashtag: #CorneliaDeLangeSyndromeAwarenessDay

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Ways to celebrate

Small, doable ways to celebrate Cornelia de Lange Syndrome Awareness Day.

Share one reputable resource with your network.
Donate to a patient-led organization working on cornelia de lange syndrome awareness.
Check in on someone you know who's living with it.
Book the screening or appointment you've been putting off.
Listen more than you speak.

Make it your kind of celebration

Family
Have the real conversation at the table — stigma-free, no lecture.
Kids
Answer questions honestly and age-appropriately.
Couples
Check in with each other's appointments, screenings, and follow-ups.
Office
Share vetted resources and encourage people to use their benefits.
School
Bring in an expert, survivor, or advocate to speak for a class period.
Community
Run a donation drive, a walk, or a listening session for those affected.
Just me
Reach out to someone you know is living with it. Ask how they're doing for real.

Plan ahead

Cornelia de Lange Syndrome Awareness Day is observed on the second Saturday in May. Here is where it lands for the next ten years, handy for planners, marketers and party people.

2026Sat, May 9this year

2027Sat, May 8

2028Sat, May 13

2029Sat, May 12

2030Sat, May 11

2031Sat, May 10

2032Sat, May 8

2033Sat, May 14

2034Sat, May 13

2035Sat, May 12

2036Sat, May 10

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Fast facts

Affects approximately 1 in 10,000 births

Symptoms can vary widely among individuals

The story

Cornelia de Lange Syndrome (CdLS) is a rare genetic disorder that impacts physical, cognitive, and behavioral development. Affecting approximately 1 in 10,000 births, the syndrome presents a variety of challenges for those impacted. Symptoms can vary widely, making each individual's experience unique. The second Saturday in May serves as a day to recognize these differences and promote awareness.

Read the full story

The day was first established by the Cornelia de Lange Syndrome Foundation in 1989 to encourage education and support for families. The mission is to foster understanding and acceptance within communities, ensuring that individuals with CdLS receive the necessary care and assistance. Events are held worldwide to highlight the importance of inclusion and support.

Awareness is crucial in addressing the misconceptions surrounding CdLS. Many people may not understand the condition, which can lead to isolation for affected individuals and their families. By sharing stories and information, we can shine a light on the challenges faced by those with this syndrome and create a more inclusive society. The Cornelia de Lange Syndrome community is vibrant and resilient, advocating for their rights and needs.

As we observe Cornelia de Lange Syndrome Awareness Day, we invite everyone to engage in conversations, share knowledge, and foster understanding. Together, we can create a supportive environment for individuals with CdLS and their families, ensuring that they feel valued and included in all aspects of life.