Laurie, This is excellent. I hope this can come off. Would this be a seperate website? Did you ask Danny if you could post the site on the side of this page that lists other web sites to explore? That would be neat. I would be willing to give info. to help. Since this disease is rare, and people are spread out all over the WORLD, this site seems to attract a good number of them. It brings the spread out world to ONE place. Perhaps this new b site could be accessed with a code of some sort for privacy, if privacy is an issue with some people. Or perhaps if you find the website is too risky, perhaps we could find a research doctor, hospital, etc. that we could mail a form to once a month. Then perhaps people would feel safer? These are just thoughts of mine. The idea is awesome, it is finding a way of doing so that everyone feels safe, and everyone would want to participate. Of course making a million people happy is never easy. It just can't be done. But that is ok for the ones that wish not to participate. It was hard in the begging for me to participate on this message board. I still worry what sicko is reading my most personal feelings and aspects of my life and my daughters. But as much as it has changed my life for the better, it lessens my worries. This is a dream to get all this information to one place. Perhaps it would help circumstances like the Cortef problem. Maybe if we were submitting info to one place that studied this instead of one doctor's office that has say 25 patients with this disease if that, then they could see these important changes sooner. That would be great. Perhaps NORD could help in some way. I also would like to see the sight as strictly information given from us. So everyone still would want to come here to post there thoughts, venting, mending, ideas, ect. Ok I am sorry if I am ratteling. Good Luck, I am behind ya!!!!