Patient Advocate Usher syndrome and Rare Diseases
L: Thank you Dominique for this meeting. As President of USHER Italia A.P.S., I wanted to meet you having learned that you’ve been involved in the field of Usher Syndrome for some time. When did your commitment begin?
U: Thank you, Mirella, for this interview.
We would like to ask you some questions aimed at helping readers understand the situations, thoughts, and feelings that a parent of a person with Usher Syndrome may experience. In your testimony, you mention the “obstacles” that your son A. has faced. What were those obstacles?
Investigatore Principale dello studio Uni-Rare, Clinica Vista Vision, Brescia (IT)
U: Thank you, Dr. Calzetti, for your availability for this interview. We know that you are working on a study that also concerns people with Usher Syndrome. What study is it?
