The National Institute on Deafness and Other Communication Disorders (NIDCD) is a resource to learn more about Usher syndrome, its progression, and genetic causes.

The Usher Syndrome Coalition's mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. They are a resource for the Usher syndrome community, bridging the gap between researchers and families.

The Foundation Fighting Blindness is a non-profit organization in the United States that is dedicated to finding treatments and cures for inherited retinal diseases, including retinitis pigmentosa, macular degeneration, and related conditions. The foundation funds research, provides education and support for affected individuals and their families, and advocates for policies that promote vision health.