For me was an honor to speak at the State Capitol in Hartford and educated state legislators about rare diseases.I closed the session for Connecticut Rare Action Network powered by National Organization for Rare Disorders, Inc. (NORD)).

This brave and talented young lady refused to let her circumstances stop her from making a difference. She is truly an inspiration.


This brave and talented young lady refused to let her circumstances stop her from making a difference. She is truly an inspiration.

Today was a very productive day advocating for The Rare Disease Day and Bleeding Disorder Awareness Month. I had the possibility to speak with Senator Tony Hwang CT and State Rep. Mitch Bolinsky . They were so amazing, very attentive of what I shared and what I was advocating for at my 11 years old. Thank you so much for your time and the attention you gave to me and our bledding community group from Connecticut Hemophilia Society and National Organization for Rare Disorders, Inc. (NORD).