Hello All,
First of all, Sue, how did you get a preprint of the Consensus Statement and can you please email/mail me a copy?

I want everyone to know how upset I was that no one from the CAH community was invited to attend the LWPES/ESPE meeting, but the organizers assumed that ISNA could represent the interests of those with CAH! I even wrote to the organizer, Dr. Peter Lee, 11 months before the meeting when I first heard of it and asked that CARES be allowed to attend to speak for CAH. I was told that we would be invited but the invite never came. I then put together a group letter with the representatives of the other CAH groups in the UK, AU and NZ and emailed or sent it to all of the attendees. We asked that the group not consider CAH without the representation of the community.

We also asked that they get rid of the word "Intersex" and recognize that CAH is NOT "intersex".

You can read our letter on page 14 of our winter 2006 newsletter http://caresfoundation.org/news_letter/Newsletter-PDF/Winter06.pdf

I would like to read the "Intersex" Statement before offering any commentary. I want to see whether it deals much with CAH (I was told it would not since there had been a CAH consensus meeting in 2002). I also want to see to what extent they responded to the comments in the CAH group letter.

I dislike using any term other than "CAH" to refer to individual with the disorder. It creates connotations that can leave erroneous impressions about the child in the minds of the family and ultimately the child and serves no purpose other than to make it slightly easier for the doctors in the neonatology units to classify children with genital anomalies in the beginning before diagnosis.

The CAH community needs to have its own voice and its own separate identity. We need to stand up as a community for OUR concerns and for OUR interests. No one, not LWPES, ESPE, ISNA or any other group can speak for those with CAH. I hope CARES can be the institutional voice and humbly express the views of the majority of our community.

Best,
Kelly

Kelly Leight
CARES Foundation

kelly@caresfoundation.org