About us

We are parents who are dedicated to supporting the International NCBRS community with information, resource tools, parental support and all the latest medical information.

Nicolaides-Baraitser Syndrome (NCBRS) is a rare genetic condition that is present at birth, is usually recognized during childhood, and can affect anyone. NCBRS does not discriminate. It is known to occur in both males and females, and in every culture. Currently there are just over 100 confirmed cases worldwide.

NCBRS is caused by a change in a gene called SMARCA2 that has started in a child and is not present in either parent.

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