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Review for Usher Syndrome Coalition, Maynard, MA, USA

Rating: 5 stars  

I have a 37 yr old daughter with Ushers III. USH Coalition focuses exclusively on all types of Ushers doing education, coordination of research and clinical trials by scientists , domestically and internationally working on funding by the NIH/NEI for research . While an orphan disease, it is the largest cause of deaf Blindness, in the U. S and many foreign countries it is extremely efficient given its limited resources. There is no waste of human or financial resources. I am a volunteer, donor, parent of an adult going deaf and blind.

Role:  Board Member