Locating Rare disease info on net???

[Sheila <SBALTZELL@DESIRE.WRIGHT.EDU>]

Hello,
Does anyone knwo where I can locate info. on a rare disease.  It is called
Erdheim Chester Disease and I am going to do a seminar on it for my physiology
class.  I would like to get more info and hopefully through the net if I can.
If you know of anyplace where I canm e-mail a doctor, etc.  please respond.
Thnaks in advance,
Tom Baltzell