If you cannot find a specialist in DSD care, here are some good, evidence-driven resources you, your parents, and your doctors can go to for up-to-date information on DSD, research, and care.
For families and doctors:
- dsdfamilies.org
- dsdgenetics.org
- AccordAlliance.org
- Sex development in kids with and without DSD conditions
For doctors:
And, if you want to be part of research yourself, you can always ask your doctor to include you in a registry –a place where doctors collect anonymous medical information and share it with researchers so that they can use that information to improve the care they give— your experience can help make care better for others with DSD, too.