The DDX3X Foundation Registry (DFR)
The DDX3X Foundation launched the DDX3X Foundation Registry (DFR) to provide a robust, accessible dataset to families, researchers, clinicians, and companies working to treat DDX3X Syndrome. The DDX3X Foundation, guided by families and experts in the field, realized that poor understanding of DDX3X Syndrome is a major impediment to the development of new treatments and a cure. The DFR is envisioned as an online hub to unlock the knowledge of affected individuals and their families, and share it with researchers and clinicians developing treatments.
The DDX3X Foundation is a nonprofit organization founded in 2015 to find a cure for DDX3X Syndrome. As part of our mission, the Foundation supports existing research, education, and treatment programs focused on DDX3X Syndrome. The Foundation has three primary functions: research, connecting families, and raising awareness. The DDX3X Foundation administers and sponsors the DFR.
Your Data Helps Advance Research
DDX3X Syndrome is rare, so each participant is crucial. Researchers, clinicians, and companies need to better understand who is affected and how they are affected in order to successfully develop treatments. By voluntarily sharing information with the DFR, you can help ensure that the field is focused on aspects of the disorder that are most important to those affected.
The DFR welcomes those who have been diagnosed with DDX3X Syndrome. Registration is easy, and you can choose what information you want to share through surveys.