CdLS Awareness Day
Shedding light on CdLS, fostering understanding and support for those navigating this unique journey of resilience and strength.
Drive awareness and donations for the CdLS Foundation by connecting affected families with support resources and encouraging corporate/individual giving on Awareness Day.
- Meet families living with CdLS: stories of resilience and strength
- Only 10% of CdLS patients are connected to support—help close the gap
- Donate in honor of CdLS Awareness Day and transform lives
- Healthcare professionals: recognize CdLS early and refer families to resources
Also known as Cornelia de Lange Syndrome, CdLS is a genetic disorder that is present when the affected child is born. The syndrome is typically not inherited from a parent but is due to an acquired mutation during development. It is characterized by slow growth before and after birth that leads to a short stature and affects many other parts of the body as well.
The first documented case of CdLS was in 1916 by Walter Brachman. Later, in 1933, the disorder was named after a Dutch pediatrician who was responsible for describing the illness, Cornelia de Lange. Sometimes it is called Brachman de Lange Syndrome, as a combination of these two names.
CdLS Awareness Day was established in 1989 with the purpose of educating and raising awareness about this syndrome and the people affected by it. Occurring in approximately 1 in every 10,000 births in the US, this is a very rare disorder that can cause feelings of isolation.
The hope for CdLS Awareness Day is that more affected families can be brought together and the general public educated to create more opportunities for support and care!
Connect with the CdLS Foundation
Families who are affected by CdLS can always use more support. CdLS Awareness Day is an excellent time to get connected with the foundation. It is estimated that approximately 30,000 Americans are living with this syndrome, but less than 10% of them are connected with the CdLS Foundation, so raising awareness could help thousands of others to get the support they need. Parents, grandparents, siblings, friends and, of course, individuals who are diagnosed with the syndrome can all find support through the foundation. Those who don’t know anyone with this syndrome but would like to make a difference can make a donation to the CdLS Foundation in honor of CdLS Awareness Day.