I live in Alexandria, Virginia - You must call me or email me and I can tell you personally about my experiences with the NIH.  As I said - the doctors are very good!! My boys were not in the experimental treatment.  I can page the doctor 24 hours a day and they call immediately. I also have a great regular ped doctor and they do not take any chances with CAH if the kids are sick. The best thing about NIH doctor - they specialize in CAH and have almost 100 kids in the practice. 

CARES foundation has also helped me alot.  Sign up for their newsletter on the CARES web page or email or call Kelly Leight.  She is doing wonderful WORK - my hero!!

roberta - roberta.pre@msn.com  703-370-4611 at home. Call me anytime!! But I am moving to Germany on 1 November.  The CARES, NIH doctors and Dr. Maria New referred me to some good ped endo in Germany.