IPH-NET THE NEWSLETTER September 23,1999Welcome to the latest edition of the IPH newsletter. If you know of someone who does not receive this but would like to, send their e-mail address to me at iph@bigfoot.com . Also, if there is someone that does not have access to a computer, but would like more info or a copy of the newsletter, I will make sure that they will get a copy by snail mail. I would first like to thank all of you for answering the call and providing support and comfort to the families and individuals recently diagnosed with IPH. And a special thanks to those who have responded to Dr. Garcia in the Philippines. WHO'S YOUR DOCTOR?? I would like to start a new page on the website that will provide instant access to find medical professionals and hospitals that are knowledgeable about IPH. A newly diagnosed patient or family could save valuable time by having an instant list so that their doctor may consult with. Please send me information on your doctor or medical center to iph@bigfoot.com INFORMAL SURVEY..... I am also working on an informal survey on the members of the group. If you want to take part, just send me the age at which you were diagnosed, how long you have had IPH, and if you are male or female. Send the info to iph@bigfoot.com GET THE WORD OUT! Ever had people give you a blank stare when you mention IPH? Very few people outside the medical community have ever heard of Idiopathic Pulmonary Hemosiderosis. The only way to increase awareness (and interest) in IPH is to educate everyone in your immediate community. If you belong to a church or social group, make sure they know what IPH is and how you are affected by it. If you have access to any media outlet, public official, or know someone that can get you access, give them your story. NEED HELP? Just remember, I am not a doctor, but a parent. Always consult with medical professionals when dealing with this disease. If there are any other questions that you have, such as insurance, SSI, or just to vent, e-mail me at iph@bigfoot.com NEW SITE ONLINE!!!! I have a new mirror site up at http://iph.homepage.com The site is the third mirror for IPH-NET. The addresses for IPH-NET are: http://members.xoom.com/iphnet http://iph.homepage.com http://www.geocities.com/heartland/meadows/5634 http://iph.cjb.net http://here.is/iphnet If you have any information or resources that you would like to share, send it to me at iph@bigfoot.com Omer Sayles iph@bigfoot.com http://members.xoom.com/iphnet