I would like to welcome you to the inaugural newsletter of IPH-NET, the ONLY site on the Internet with info and resources exclusively dealing with IPH (Idiopathic Pulmonary Hemosiderosis). For those who haven't been to the website for a while, the addresse(s) are: http://members.xoom.com/iphnet (site 1), http://www.geocities.com/heartland/meadows/5634 (site 2), and http://here.is/iphnet (redirect address). If you have anything that you feel may be useful to a patient with IPH, feel free to send it to iph@bigfoot.com

To those who don't know of me, let me introduce myself. My name is Omer Sayles. I am the webmaster oh the IPH-NET website. This site has been up in one incarnation or another since 1996. My daughter was first diagnosed with IPH in 1983-84. She is now finishing her junior year in high school. She is in every way a normal teenager, except for the bleeding episodes that she has from time to time. She is studying to become an EMT, and wants to go to college to become a doctor.

At this time, the main thing I would like to do is make sure that everyone that is affected by this disease and those who are friends, relatives, or medical professionals treating IPH receives a copy of this newsletter. If you know someone who might benefit from receiving this or is interested, please forward this to them. If they do not have a computer, let me know and I will get a copy to them by snail mail.

IPH-NET is now part of the Rare Diseases Ring and the Kim Komando Radio Show Webring. Since I have joined the webrings traffic to the site has increased tenfold in the last 2 months. IPH-NET is now listed under YAHOO! and kansascity.com I am working on making some banners so that other sites can have a click thru banner to the site.

IPH is not a disease that is going to wind up on the front page of Time magazine, or as the lead news story on Nightline. What we all have to do is increase awareness about IPH. When I started researching IPH in 1984 I found one book with a mention of the disease. After 15 years the information is greater, but the quality of the information is the same. There are many "veterans" of IPH who are not even supposed to be alive after two years, according to the textbooks and medical "information" websites. The National Institute of Health did not list IPH as a rare disease (less than 50000 cases) until April 1999 and two e-mails. The National Organization for Rare Disorders still does not have IPH listed as a rare disease. There are no actors or sports figures with IPH, just a lot of good people who are on their own. If you see someone post a question about IPH or has just been diagnosed and is looking for info, send them all the info you have, and all of the websites that might help them. We all know how frustrating it is to be looking for credible info on IPH.

I would like to share the e-mail addresses of the people that I have collected who are affected by IPH. If you would (or would not) like to be included on this list, please let me know at iph@bigfoot.com This list will be for the IPH patients, family, and doctors/friends only, and will not be released to anyone else. I would like to give all of the patients/families/doctors the ability to correspond with others with IPH and share info.