Dear Dent mothers, fathers and patients,
We have worked hard to create the survey at RDCRN (Rare Disease Clinical Research Network - NIH sponsored). No good response yet - only about 10 patients finished.
Link below, please consider!!!
https://www.rarediseasesnetwork.org/cms/rksc/Get-Involved/Contact-Registry
This is an easier, faster form of research and allows people from all over the world to do it.
You will be asked to join contact registry and then do the survey. Good luck! Takes 10 min for moms and a little longer for patients - parents can do that one as well, even if kids are over 18!
Please remember, the outcomes of this disease depend on your participation. It is a slow process, but if there is no process, there will be no outcome.
My warmest regards,
Lada