State Prevalence estimates

Estimated Number of People with Usher Syndrome by State

Updated March 2026 · Based on U.S. Census Bureau Vintage 2025 State Population Estimates (July 1, 2025, released January 2026)
Prevalence range: 1 in 17,000 (Boughman, 1983) to 1 in 6,000 (Kimberling, 2010)

State 2025 Population Low Estimate
(1 in 17,000)		 High Estimate
(1 in 6,000)
Sources: Boughman JA, et al. (1983). Am J Hum Genet 35(6):1176–84  |  Kimberling WJ, et al. (2010). Hearing Research 268(1-2):11–15  |  U.S. Census Bureau, Vintage 2025 Population Estimates, January 2026
Alabama5,193,088306866
Alaska737,27043123
Arizona7,623,8184481,271
Arkansas3,114,791183519
California39,355,3092,3156,559
Colorado6,012,5613541,002
Connecticut3,688,496217615
Delaware1,059,95262177
District of Columbia693,64541116
Florida23,462,5181,3803,910
Georgia11,302,7486651,884
Hawaii1,432,82084239
Idaho2,029,733119338
Illinois12,719,1417482,120
Indiana6,973,3334101,162
Iowa3,238,387190540
Kansas2,977,220175496
Kentucky4,606,864271768
Louisiana4,618,189272770
Maine1,414,87483236
Maryland6,265,3473691,044
Massachusetts7,154,0844211,192
Michigan10,127,8845961,688
Minnesota5,830,405343972
Mississippi2,954,160174492
Missouri6,270,5413691,045
Montana1,144,69467191
Nebraska2,018,006119336
Nevada3,282,188193547
New Hampshire1,415,34283236
New Jersey9,548,2155621,591
New Mexico2,125,498125354
New York20,002,4271,1773,334
North Carolina11,197,9686591,866
North Dakota799,35847133
Ohio11,900,5107001,983
Oklahoma4,123,288243687
Oregon4,273,586251712
Pennsylvania13,059,4327682,177
Rhode Island1,114,52166186
South Carolina5,570,274328928
South Dakota935,09455156
Tennessee7,315,0764301,219
Texas31,709,8211,8655,285
Utah3,538,904208590
Vermont644,66338107
Virginia8,880,1075221,480
Washington8,001,0204711,334
West Virginia1,766,147104294
Wisconsin5,972,787351995
Wyoming588,7533598
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“I fight for my son, whose world will go dark and quiet if I do nothing. We have to KICK down the door and make DC hear us. No cure is not an option, never will be.”   
Max Hunt, USH Champion, father of a child with Usher syndrome

In this video, Krista Vasi shares a brief overview of the Usher Syndrome Coalition's advocacy efforts so far, where we are today, and how you can get involved. Click the video below to watch Krista's presentation with English and Spanish captions on YouTube. 

Or click here to watch in ASL:

For more information: