As some of you know, the state of Maryland is now considering adding CAH to the newborn screening panel. The first meeting I went to for the Advisory Council (as a 'consumer') was held in March. A follow-up meeting is scheduled for this Thursday, May 4. At the last meeting, I was asked if I was representing any particular group. If there IS an international support group for CAH, I never found any info on the web. As a matter of fact, one of the members of this Council works for the Genetic Alliance (a sort of clearinghouse for non-profit support groups which Danny has linked onto this board). They do not have a CAH support group listed with them. They have National Adrenal Disease Foundation, MAGIC Foundation, and two Intersex support groups (yikes!). But as far as ONE SINGLE group strictly for CAH....they are unaware of one. She gave me all the info required to start up a support group...including to become tax-exempt, etc. Frankly, I am not up to putting in all the time, energy, and possibly, money required to formally establish such a group myself. If it's OK with you all, I, if asked, would like to say I am simply representing this board. Nothing official or formal....just a group of parents, grandparents, friends, etc., who deal with CAH on a daily basis. Sure, a "formal" support group adds legitimacy and would possibly be more professional, but the current lack of one cannot (or should not) prevent CAH from being added to the screening program....in this state or in any other state. Somehow, even WITHOUT an international, formally-established support group for CAH, about 20 states and several other countries have managed to add CAH to their NBS panel. The people on this Council are pretty cool...I'm looking forward to Thursday's meeting. Thanks for your input! kbassler@home.com