There are many causes of deafblindness, and each has unique characteristics and challenges. More than 70 causes were identified in 2022. Some are more prevalent, such as CHARGE Syndrome, Down Syndrome, Usher Syndrome, and Congenital Cytomegalovirus (CMV), with 100 or more cases of each reported every year. Annually, about 20 identified causes have fewer than 10 reported cases. Some of these, such as Waardenburg Syndrome and Cogan Syndrome, are exceedingly rare with just one or two cases reported annually.

Here are some highlights from the data:

  • The number of children with hereditary syndromes and disorders was 5,189 in 2022, accounting for 49% of all etiologies.
  • The number of children with CHARGE syndrome was 1,051.
  • The prevalence of Stickler syndrome increased and Cornelia de Lange Syndrome decreased but both are still relatively rare.
  • Prenatal congenital complications accounted for 13% and postnatal non-congenital complications accounted for 11%.
  • Congenital Rubella Syndrome (CRS), which has long been associated with deafblindness, is no longer common in the U.S.; 26 children had CRS, which is down from 30 in 2021. Of these, 15% are younger than 10, and the youngest age is 3.
  • The etiology was undetermined in 1,872.