These are the Organizations and People That have gotten on the Internet and made a Big Difference
If you would like more info on O.I., from people who are experts not just some flakey artist, then get the OFFICAL scoop from the Osteogenesis Imperfecta Foundation at the OFFICAL Osteogenesis Imperfecta Foundation Website (U.S.A.)Or E-mail: BoneCare@aol.com or BoneLink@aol.com Or Phone: 1-800 981-BONE or 1-(301) 947-0083 Or by writting to: Osteogenesis Imperfecta Foundation 804 W. Diamond Ave., Suite 210 Gaithersburg, MD 20878 Here is a List of other official OI Foundation Websites around the world:
The Europoean OIF
The New Zealand OIF say hi to Peter for me
Andrew Barry has done a most Excellent job of bringing together people from all over the globe on this list- if you want to talk to people with or in some other way related to OI this is THE spot!
To subscribe to the OI Mailing List, send a message to:majordomo@dstc.edu.au
Don't put anything in the "subject" field, and in the body of the message enter the words:subscribe oi
You will receive a welcoming message soon afterwards, with instructions about how to use the list.
There is a usergroup out there at:alt.support.osteogenesis.imperfecta.
This doesn't seem to be getting many hits- but maybe you can get something going on it- maybe some good gossip or something would help!
O.I. Internet chats are held at 8:00 PM ET - 10:00 PM every Sunday night. To access the Web Internet OI Chat: Goto the OI Foundation web page: http://www.oif.org Click on the words chat room Type in your screen name Do not enter password (it is not needed) Click on Easy Talk Click on Start Chatting That should enter you into the chat room. If you have any problems finding us please contact: Susie Wilson for the AOL version, via instant message (OISLW@aol.com) and I will help guide you to us. David Morrison via email or instant message DavidM5047@aol.com or davem@mindspring.com and David will help you.
Dr.Horacio Plotkin decided to start the "OI Dictionary Project". The idea is to translate specific terms and jargon to layman terms. He says, "I compromise myself to get authorities in the field of OI involved in the project. I will very much appreciate if you could send me terms that you would like to be translated or explained. The progress will be posted in the Bones Page. With doctors like Dr. Plotkin working for us we are in good hands. Thanks Doc for for all you are doing.
If anybodywants to send me to Europe I would be more than glad to tell you about the European OI Federation. Of course if you can't afford that maybe you should just write to Rob van Welzenis, President of the OIFE.
Another great Webpage and a Great effort put forth is the German OI Page. Dr. Konstantin has went the extra mile or several miles to bring this page to us.
It gets cold in Fairbanks Alaska so one might think there might not be much to do there sometimes well Carone Strum has found out alot to do there and one thing she does is to get the word out about O.I., her website is SO GOOD I have really been embarrassed with mine, but I have gotten insired by her and have decided to lively up my pages.
The
German OIF
The
Belgian OIF
The
Japanese OIF
The
French OIF
The
Italian OIF
The
Kuwaiti OIF
The
Polish OI Society
The
Brazilian OI Page (in Portuguese)