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News for the fragile X community. Research, what findings mean for families, event highlights, and study announcements.


OFXW research partner leads new clinical trial for children with fragile X

Dr. Elizabeth Berry-Kravis

According to a recent article from FRAXA Research Foundation, Our Fragile X World partner Dr. Elizabeth Berry-Kravis is starting a new study for children with fragile X. Dr. Berry-Kravis is a well-recognized fragile X researcher and leads a fragile X clinic at Rush University Medical Center. This large-scale clinical trial will recruit children with fragile X ages 3 to 6 years old. The study will use an innovative design, combining both a treatment drug and a 6-month intensive language intervention. The drug, called AFQ056, is made by Novartis.

Read the full article, including an interview with Dr. Berry-Kravis.

We're looking forward to hearing more about the study and learning how it might inform care for people with fragile X.

Tell Us What You Think

With that in mind, we'd love to hear your thoughts about research on fragile X. Please consider sharing your questions or comments with us.

What research do you think needs to be done on fragile X? What are your thoughts on fragile X research? How has research on fragile X impacted your life? We hope to hear from you!