Make your own free website on Tripod.com

Welcome to IPH-NET

Information on Idiopathic Pulmonary Hemosiderosis


IPH-NET


If this is your first visit: Please check the links on IPH, forward them to your physician, keep them handy in case of an Emergency Room visit!

Thank you all for your kind words and patience while I am able to concentrate on this website again! I know it has been forever since there have been updates and a newsletter, but just bear with me as this site is being updated

Welcome to the newest mirror site for IPH-NET. I would like to thank TRIPOD for the free webspace. Just remember the url for this site is http://iphnet.tripod.com/

NEWS AND UPDATES

NEWS: 12-29-2009

The Wikipedia page on Idiopathic Pulmonary Hemosiderosis has been updated!

Many thanks to the fine people at Wikipedia for adopting the IPH Wiki.

http://en.wikipedia.org/wiki/Idiopathic_pulmonary_haemosiderosis

 

PLEASE READ THIS!!!!

UPDATES

01-01-2010.....

IPH-NET is now on Facebook, Twitter, and MySpace!

http://www.facebook.com/iph.net

http://twitter.com/iphnet

http://www.myspace.com/iph-net

 

12-09-2009......For the FIRST time, there is an IPH message board!

This is YOUR chance to get involved, take advantage of it!

It is not perfect yet, but it is up and running.

http://iph-net.proboards.com

Take part, GET INVOLVED!

As many of the free webspace providers have closed recently, I am looking for more providers to mirror this site on. Check back for updates on this situation.

If you have a story, link,  or anything you would like to have in the next newsletter, PLEASE let me know! 

NEW FEATURE! I have added a section that includes articles written by people affected by IPH and medical professionals. A young man latemi@jazzcyber.com who was diagnosed with IPH at 4 years old and is now 30 has graciously donated a copy of his medical history to be published. A respiratory therapist JannW99@aol.com has allowed me to publish a paper that she wrote on IPH. I have included her e-mail address and a link to her website which has some very interesting respiratory links. Click here to view the menu

Links, links, links. If you have one that you would like included, e-mail me at iphnet@hotmail.com  If you have a story, link,  or anything you would like to have included, PLEASE let me know!

If you haven't visited this site recently you will notice some changes in the way this site is set up. If you are on a site or newsgroup where someone is inquiring about IPH, send them a message about this site. If you have a home page set up, please include this site in your links. I have been scouting the newsgroups and have found a growing number of people whose lives or a family member have been affected by IPH. When I was looking for information about IPH in 1983-84 there was one book in the library and NO easily accessible electronic medium for research. BTW, if you are involved with a foundation or non-profit organization and have a little insight into how to set one up, please e-mail me. I am working on setting up a national organization so that people and families affected by IPH have a greater voice in the health community.

REMEMBER!!!! GET INVOLVED! Your time and effort are worth more than any amount of money. If you can find documents in medical journals, doctors that are doing research on IPH, or even set up your own page about your experiences with IPH, another person looking for information may benefit. There are no IPH Telethons, media or sports figures with IPH, or congressional hearings. It is up to all of us to look for and share information with each other. If you have ANY information that you think may be beneficial to someone with or treating IPH, please send it to me at iphnet@hotmail.com

This page is always under construction. Please be patient, as this site evolves......with more links, sources of information, and other happenings in the treatment of IPH.

MIRROR SITES! I am working on setting up additional mirror sites on other servers or separate new sites.
Please
add this site to your links list! If you would like to set up your own site on IPH e-mail me at iphnet@hotmail.com and I will help with sources of FREE webspace!

WHAT IS IDIOPATHIC PULMONARY HEMOSIDEROSIS (IPH)?

Click on these links to find out about IPH

Idiopathic Pulmonary Hemosiderosis: Two different presentations, One way to diagnose

Singapore Medical Journal Article

Case Based Pediatrics For Medical Students and Residents

Chest Article - Prognosis in Pediatric Idiopathic Pulmonary Hemosiderosis    -NEW!-

Please send any and all links and articles concerning IPH to: iphnet@hotmail.com

IMPORTANT!

If you or a loved one have IPH and don't know where to turn, these doctors and hospitals
are knowledgeable about IPH. If you have any more doctors or hospitals to add to the list please e-mail
them to me and I will add them to the list

Children's Mercy Hospital

Philip Black, M.D.
Children's Mercy Hospital
2401 Gillham Rd.
Kansas City, MO 64108
(816) 234-3000

Dorr G. Dearborn, Ph.D., M.D.
Pediatric Pulmonary Division
Rainbow Babies & Childrens Hospital
11100 Euclid Avenue
Cleveland, Ohio 44106
FAX (216) 844-5916

Steven Stites, M.D.
Title: Associate Professor
Department: Pulmonary and Critical Care Medicine
Email: SSTITES@kumc.edu
Main Phone: (913) 588-6045
Mailing address: Mailstop 3007
3901 Rainbow Boulevard, Kansas City, KS 66160


The Mayo Clinic

MORE NEWS

There is a move to try to establish a NATIONAL ORGANIZATION for Idiopathic Pulmonary Hemosiderosis. If you have any experience working in, setting up, or know anyone who does, please direct them to my E-mail address: iphnet@hotmail.com

NEEDED---

I am looking for someone with some good links to sites concerning Gluten free diets.

If you have any questions or information regarding Idiopathic Pulmonary Hemosiderosis, please e-mail me at:  iphnet@hotmail.com --NOTICE-- This page is for the distribution of information only! PLEASE contact licensed medical professionals for diagnosis and treatment.

Links to other IPH/Lung related sites on the Web

If you have any new links to IPH sites or any legitimate info, please e-mail them to me and I will post them ASAP. My e-mail address is: iphnet@hotmail.com

I would also like to thank Tripod and the  redirect services for allowing me to put this page up.
Thanks are also in order to Hotmail for the E-mail address.
I am working on a special page to thank the individuals, businesses, and organizations that have been so generous in donating time, space and expertise in making this site happen. As of right now, I would like to thank all of you, as your help could save the life of my daughter or another person out there with this insidious disease.

If you find any broken links or errors, please contact the webmaster

 

1995-2010 iphnet@hotmail.com