Our Fragile X World is a research community dedicated to gathering practical information about the experiences of individuals with fragile X syndrome and their families.
Our Fragile X World conducts research to address the issues facing patients with fragile X and their families.
Families taking part in our studies donate valuable time to Our Fragile X World. You share important information about your lives and your children. Because we respect and appreciate your help, we pledge to use your information responsibly. We promise that we will
- always tell you who is funding any study you take part in and what we hope to learn from it;
- never share your name, contact information, or personally identifiable study responses with any other person or group;
- respect your wishes with regard to study participation;
- publish findings from the information you provide in respected scientific journals; and
- share what we learn with you, policy makers, advocates, and professionals.
Since 2007, over 1,400 families have taken part in Our Fragile X World research. Their time and help have been priceless. These studies have given us a wealth of new knowledge about fragile X. To share this information, Our Fragile X World has built a large, worldwide community of families and researchers. This community is dedicated to helping people affected by fragile X. Learn more about our work.