National Cornelia De Lange Syndrome Awareness Day
National Cornelia De Lange Syndrome (CdLS) Awareness Day is dedicated to raising awareness about a rare genetic disorder characterized by distinctive facial features, growth delays, intellectual disabilities, and various physical differences.
Quick Facts
When is it?: Second Saturday in May
Tagged as: CdLS Awareness Day
What’s the hashtag?: #CdLSAwareness
When was it founded?: 1989
Who founded it?: CdLS Foundation
History of CdLS Awareness Day
The day was established to educate society about CdLS, promote understanding, and create awareness about this rare genetic condition. The syndrome was first documented in 1916 by Walter Brachman and later named after Dutch pediatrician Cornelia de Lange, who described the condition in 1933.
Timeline
- 1916: First documented case by Walter Brachman
- 1933: Named after Dr. Cornelia de Lange
- 1981: CdLS Foundation established
- 1989: First CdLS Awareness Day observed
- 2004: First CdLS gene discovered
Dates 2025-2030
| Year | Month and Date | Day |
|---|---|---|
| 2025 | May 10 | Saturday |
| 2026 | May 09 | Saturday |
| 2027 | May 08 | Saturday |
| 2028 | May 13 | Saturday |
| 2029 | May 12 | Saturday |
| 2030 | May 11 | Saturday |
How It’s Observed
Communities worldwide organize events, share stories, and raise funds for research. Families affected by CdLS connect with others, while medical professionals and organizations work to increase understanding and support for those living with the syndrome.
Fun Facts About CdLS
- Affects approximately 1 in 10,000 live births
- Named after a female Dutch pediatrician
- Affects males and females equally
- People with CdLS can live well into adulthood
- Often called “Bushy Syndrome” due to characteristic facial features
Quiz
- When was CdLS first documented?
- Who is the syndrome named after?
- How often does CdLS occur in live births?
-(Answers: 1916; Dr. Cornelia de Lange; 1 in 10,000)
FAQs
Q: Is CdLS inherited?
A: Usually not; it typically occurs due to new genetic mutations.
Q: Can CdLS be cured?
A: There’s no cure, but symptoms can be managed with proper care.
Related
- Rare Disease Day
- Genetic Disorder Awareness Month
- World Birth Defects Day
- Children’s Health Day
- Medical Genetics Awareness Week