International Cornelia de Lange Syndrome (CdLS) Awareness Day 2024: Date, history, significance

Cornelia de Lange Syndrome is a genetic disorder characterised by distinct facial deformities, prenatal and postnatal growth deficiencies, feeding challenges, psychomotor delays, behavioural issues, and associated malformations. It often arises from genetic mutations rather than being inherited from parents. Typically, affected individuals are born with the syndrome, which is relatively rare and can lead to experiences of discrimination and loneliness. Each year, International Cornelia de Lange Syndrome (CdLS) Awareness Day is observed to spotlight the difficulties and obstacles encountered by those affected by this condition. As we prepare to commemorate this important day, it's essential to keep these considerations in mind.

Date:

International Cornelia de Lange Syndrome (CdLS) Awareness Day is commemorated annually on the second Saturday of May. This year, the event falls on May 11.

History:

Cornelia de Lange Syndrome, a rare genetic disorder characterised by distinct facial features and various developmental challenges, was first documented by Walter Brachman in 1916. However, it was Dutch paediatrician Cornelia de Lange who provided a detailed description of the syndrome in 1933, leading to its eponymous naming. Sometimes, it is also referred to as Brachman Cornelia de Lange Syndrome.

Significance:

This day serves as an opportunity to raise awareness about Cornelia de Lange Syndrome, shedding light on the difficulties faced by individuals affected by this condition. It encourages education about the disorder, including its genetic origins and associated challenges. Efforts are made to enhance access to treatment and support services, fostering collaboration among medical professionals, NGOs, and organisations to improve the quality of life for those living with Cornelia de Lange Syndrome.