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Review for Usher Syndrome Coalition, Maynard, MA, USA

Rating: 5 stars  

The Usher Syndrome Coalition has accomplished a great deal for people with this rare disease. It has brought together the researchers and the patients and their families, working together toward a common goal. We are closer to a cure because the researchers are now communicating at international research conferences, and the patients are now signing up for an international registry that is facilitating research and clinical trials. It is a wonderful example of what determined families and a cohesive community can establish.

Role:  Board Member