Cornelia De Lange Syndrome Awareness Day

Cornelia de Lange Syndrome Awareness Day is designed to shed light on a syndrome that is not well-known and is often misdiagnosed as something else. This syndrome, also known as CdLS, is a genetic disorder present at birth but often diagnosed much later. It affects the intellectual and physical development of a child and can lead to severe developmental abnormalities.

It affects an estimated 1 in 10,000 children. The day that raises awareness about this condition is observed annually on the second Saturday in May and encourages everyone to learn more about this disorder and to donate to organizations currently researching this syndrome.

The History of Cornelia de Lange Syndrome Awareness Day

This holiday was created in 1989 by the CdLS Foundation to raise awareness about the syndrome and to encourage people to get involved. People can get involved by donating their money, time, and expertise. If we all work together, we can help improve the situation for the estimated 30,000 men, women, and children who have CdLS but are still undiagnosed.

Some Important Facts About CdLS

Below are some facts that we have gleaned about CdLS that we think are appropriate to share with everyone reading about Cornelia de Lange Syndrome Awareness Day.

  • Special events such as bake sales, golf tournaments, and other activities help raise money for the CdLS Foundation.
  • Common medical issues for those with CdLS include seizures, feeding difficulties, hearing loss, reflux disease, and vision problems.
  • CdLS is caused by mutations in several genes.

Observing Cornelia de Lange Syndrome Awareness Day

We think that we have pretty much said how this holiday should be observed in the above paragraph, but we thought that we would reiterate it here. Everyone who now knows about this holiday and about CdLS should take the time to donate their time, money, expertise, and social media space to this day. Use the hashtag #CdLS on your social media account and spread the word about this holiday as well.

When is it?
This year (2024)
May 11 Saturday
Next year (2025)
May 10 Saturday
Last year (2023)
May 13 Saturday
Awareness & Cause, Health & Body