For questions about the USH Trust, please contact:
Krista Vasi
Executive Director
Usher Syndrome Coalition
Email: k.vasi@usher-syndrome.org
Phone: +1 (800) 946-9203, Option 1
Usher Syndrome Coalition
9 Cornerstone Square, Suite 400-224
Westford, MA 01886
USH Trust Registry Phone: +1 (800) 946-9203, Option 1
Videophone: (631) 533-9621
Send us a message - info@usher-syndrome.org
For researchers with questions about registry data:
De-identified data from the registry is available to researchers upon request. Researchers should send an email to
k.vasi@usher-syndrome.org detailing the data sought and the intended use. Requests will be reviewed by the Registry’s Review Board. The Review Board is made up of researchers, individuals with Usher syndrome and parents of children with Usher syndrome. Determination will be made within eight weeks of receipt of the request.
