For questions about the USH Trust, please contact:
Krista Vasi
Executive Director
Usher Syndrome Coalition
Email: k.vasi@usher-syndrome.org
Phone: (978) 637-2625
Usher Syndrome Coalition
63 Great Road, Suite 207
Maynard, MA 01754
USH Trust Registry 1 (855) 998-7437 Option 1
VP (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.
