CORNELIA DE LANGE SYNDROME AWARENESS DAY
Observed annually on the second Saturday in May, Cornelia de Lange Syndrome Awareness Day sheds light on this often misdiagnosed, little-known syndrome.
Cornelia de Lange Syndrome (CdLS) causes a range of physical, cognitive, and medical challenges. It is a genetic disorder that even though present at birth, it is not always diagnosed at birth. Affecting the physical and intellectual development of a child, CdLS is often known as Bushy Syndrome or Amsterdam dwarfism. CdLS can lead to severe developmental abnormalities affecting an estimated 1 in 10,000 to 30,000.
While the condition may be visually present at birth, it often goes undiagnosed without the correct testing. Some testing via ultrasound exam can occur before birth. However, most testing takes place after birth. Part of the diagnosis process includes a careful examination of the infant. They will measure limbs, head, and face as well as check for cleft palate, diaphragmatic hernia, congenital heart disease, and gastrointestinal abnormalities. For those who present with mild symptoms, genetic testing may be necessary to identify if the gene mutations specific to CdLS have been impacted.
A Dutch physician by the name of Dr. Cornelia de Lange first described two patients with similar characteristics and symptoms in 1933. She is credited as being one of the first physicians to document the medical condition, its features, and the associated symptoms.
Many who have CdLS are unaware they even have it. The day aims to support research and better forms of diagnosis. For more information regarding CdLS day visit the CdLS Awareness Day website.
HOW TO OBSERVE #CorneliaDeLangeSyndromeAwarenessDay
Learn more about CdLS and support research into its prevention and treatment. Host a fundraiser or an awareness event to support those with CdLS. Use #CorneliaDeLangeSyndromeAwarenessDay to post on social media.
CORNELIA DE LANGE SYNDROME AWARENESS DAY HISTORY
The observance was founded in 1989 as an opportunity to educate everyone about this often misdiagnosed condition. For more information on CdLS visit www.cdlsusa.org.
9 May 2020
8 May 2021
7 May 2022
13 May 2023
11 May 2024
10 May 2025
9 May 2026
8 May 2027
13 May 2028
12 May 2029
11 May 2030
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