I really had a difficult time finding a ped endo that I thought was really good with CAH (aggressively managed CAH), so I now take my kids to the National Institute of Health.  Dr. Merke seeing patients from all over the country.  She is GREAT!!  I live locally but recently meet a woman  that has taken her son to Dr. Merke for almost 10 years and is having good results with her.  Dr. Merek  specialized in CAH.  She is doing reseach in CAH and I think you have to apply to be in her practice.  My experiences have been great with her practice.  You need to have a local ped doctor still but the doctors and nurses at the NIH are wonderful.

John Hopkins in Baltimore is another nationally know reseach center for CAH. I think recently they were looking for female patients with CAH.

I would also recommend Dr. Maria New office for genetic testing. The blood tests are taken locally and sent to her. You don’t need to go to her office in New York City.  But she can be available to your doctors for advice on treating CAH and genetic testing.

Go to the CARES web site - www.caresfoundation.org and click on link - and then click on National Institute of Health, Dr. Maria New (Cornell University) and the John Hopkins web pages.

Also CARES can refer you to other CARES members in your area.  Contact CARES on their web site or call 1-866-227-3737.

I hope you find a GOOD doctor- even if you have to travel once or twice a year - it is worth it to go to an expert and get aggressive advice.