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Note: Electronic mail is a rapidly growing communication medium. If you are a computer buff, you know about the services that are available. If you have access to Prodigy, CompuServ, America On-Line, Erols, or Internet, you may want to join in their transplant discussion groups. (If you want more information about these services, contact the TRIO Nation's Capital Area Chapter Office.)
Prodigy's Interactive Personal Service. The Medical Support Bulletin Board includes a transplant discussion group. To get there, jump to BB and choose the topic ''Other." For subject, type "Transplants" and then join in the discussions with the group, which includes transplant recipients as well as those who are awaiting organs or have just been diagnosed and are looking for help and information.
Internet Supports TRNSPLNT, a discussion list for organ transplant recipients
and anyone else interested in the issues, experiences, and realities of living
with an organ transplant. To subscribe, send the following command, via e-mail,
to
Once you are on-line, you can join with the other transplant patients who want to "share information on such things as travel, how to deal with a compromised immune system, stories about transplant experiences, and anything else that they feel is worth discussing."
There is an organ transplant newsgroup on the Internet, under the name bit.listserv.transplant. In this newsgroup, participants from around the world discuss their personal experiences, issues and opinions on a wide range of transplant-related topics. Often, medical professionals also contribute to the group. However, please note that the information presented is opinion and items stated as factual can often be unreliable, so on medically related items, ALWAYS CONSULT YOUR TRANSPLANT TEAM. TRANSPLANT NEWS GROUPS
Transplant News Group
http://www.lib.ox.ac.uk/internet/news/faq/bit.listserv.transplant.html
e-mail: LISTSERV@WUVMD.WUSTL.EDU or LISTSERV@WUVMD.BITNET
via e-mail Message to include the following information:
SUB TRNSPLNT your name (Example: SUB TRNSPLNT Claude Brady)
FAQs (Frequently asked Questions)
There are archives of frequently asked questions, the URLs are:
DIALYSIS via e-mail: listproc@mail.wustl.edu
Message to include the following information,
subscribe DIALYSIS your name (example: subscribe DIALYSIS Chick Abeles)
Questions? e-mail Dale Ester via e-mail: dalee@enet.net
news: bit.listserv.transplant TRANSPLANT URLs and e-mail addresses
If you haven't "surfed the web" you don't know what you're missing. The Internet contains a wealth of information on transplantation. There are information sites, support sites, hospital sites, news groups, chat groups and everything in between.
We could devote a whole book to the Internet and not cover everything. But, even if we did, the book would be out of date by the time it was printed. The Internet is one of the few areas that changes even faster than transplantation! We can't teach you how to use the Internet here, so we assume that you will understand the terminology used. If it all seems confusing, consult your local Internet guru and he or she will be able to clear it up for you.
The information that follows will give you a head start on your Internet exploration. It will start you off with pointers that will lead you to many destinations. How far you follow the leads is up to you.
Transweb is where you should begin your Internet exploration. It is operated by the University of Michigan and is arguably the most comprehensive source of information and links to information on transplantation on the web, including:
Transplantation Resources (Provides current listing of Resources on the Internet)
http://www.transweb.org/
TRIO Transplant Recipients International Organization
http://www.trioweb.org/
e-mail:
info@trioweb.org
Phone: 800-TRIO-386
NOVARTIS (Provides current listing of Resources on the Internet)
http://www.novartis.com/
(english)
http://www.ch.novartis.com/
(deutsche)
Alta Vista (Internet Search Engine, also see Yahoo)
http://altavista.digital.com
American Association for the Study of Liver Diseases
http://hepar-sfgh.ucsf.edu/
AAKP / American Association of Kidney Patients
http://www.aakp.org/
e-mail: aakpnat@aol.com
American Liver Foundation
http://www.liverfoundation.org/
American Red Cross Service, Tissue Services
e-mail: mayr@usa.redcross.org
Biliary Atresia & Liver Transplant Network
e-mail: OrganTrans@msn.com
e-mail: Livers4Kids@earthlink.net
http://www.livertx.org/
Bone Marrow Donors Worldwide
http://www.leidenuniv.nl
Bone Marrow Transplant News
http://nysernet.org/bcic/bmt/bmt.news.html
Bone Marrow Transplant Talk via
e-mail: bmt-talk-request@ai.mit.edu
Bone Marrow Transplant procedure information
http://137.142.42.95/BMTCancer/BMT.html
Centers for Disease Control
http://www.cdc.gov/cdc.html
Coalition on Donation
http://www.infi.net/%7Edonation/
End Stage Renal Disease Treatments
http://www.niddk.nih.gov/health/kidney/pubs/esrd/esrd.htm
Fairfax County VA Web Site
direct modem access 703-802-3270
http://www.co.fairfax.va.us
For Donor Families
http://www.transweb.org/fordonorfamilies/
Inova
http://www.inova.com
International Bone Marrow Transplant Registry
http://www.biostat.mcw.edu/
e-mail: ibmtrmh@hpo4.biostat.mcw.edu
Japanese (Transplant Surgeons)
http://www.med.hiroshima-u.ac.jp/e.Welcome.html
http://www.med.hiroshima-u.ac.jp:8082/japanese/
e-mail: nitta@mcai.med.hiroshima-u.ac.jp (Kohsaku Nitta)
Kidney Patients Resources
http://www.cc.utah.edu/~cla6202/KPR.htm
e-mail: 70373.523@compuserve.com
Alport Syndrome
http://www.cc.utah.edu/~cla6202/ASHP.html
ChronicIllnet
http://www.chronicillnet.org/
Curt's Home Page
http://www.cc.utah.edu/~cla6202/CHP.html
Hereditary Nephritis
http://www.cc.utah.edu/~cla6202/HNF.html
Internet Kidney Failure Resources
http://uptown.turnpike.net/~dynamo/kidney.hyml
Patient's resources
http://www.cc.utah.edu/~cla6202/Pts.html
U.S. Government
http://www.cc.utah.edu/~cla6202/US.html
Lifecare Journal
e- mail brgu27a@prodigy.com
LifeNet
http://www.life-net.org
LifeTIMES / Stadtlanders Pharmacy
http://www.stadtlander.com/transplant/#resource
Life Row author Ed Linz
e-mail: exchpub@erols.com
National Bone Marrow Donor Program
http://www.marrow.org/
e-mail: INFO@MARROW.ORG
National Kidney Foundation
http://www.kidney.org/
National Library of Medicine
http://www.nlm.nih.gov
National Organization of Lung Transplant Patients
http://www.web-site.com/2ndwind/
Online: Georgetown MEDINFO
e-mail: MEDINFO@gumedlib.dml.georgetown.edu
Organ Transplant Fund
http://www.otf.org
e-mail: otfnatl@aol.com
PediaHope Inc.
http://www.intrepid.net/~bwells/welcome.html
e-mail: daisy@pop.erols.com
and/or bewells@intrepid.net
Procure / Witherspoon Marketing Group
e-mail: wmarketing@aol.com
Merchandise, Transplant Support
Transplant Tee-Shirts, License Plate holders, Organ Pins,
etc.
http://www.transplantawareness.org/
e-mail: TAI01@aol.com
Merchandise, Misc., Brighten up your day
Miscellaneous bright ties, scrafs, etc.
http://www.rushties.com
Second Wind Lung Transplant Association
http://2ndwind.org/
The Diabetes Transplant Exchange
e-mail: diabtx@aol.com
The Partnership for Organ Donation
e-mail: info@organ-donation.org
TransWeb 313-998-7314
http://www.transweb.org
Transplant Awareness Inc.
VOICE: 888-268-9232, FAX: 703-534-7759
http://www.transplantawareness.org/
e-mail: tai01@aol.com
Transplant Library 313-998-7314
http://www.transweb.org/reference/books.htm
Transplant News
http://www.trannews.com
e-mail: trannews@aol.com
TRIO Transplant Recipients International Organization
202-293-0980, outside metropolitan area 800-TRIO-386 / 800-8746-386
http://www.transweb.org
http://www.transweb.org/support/trio_main.html
e-mail: TRIO@primenet.com
TRIO Nation's Capital Area Chapter 703-920-TRIO / 703-920-8746
e-mail: superday@aol.com
or
e-mail: tai01@aol.com
UNOS (United Network for Organ Sharing) 804-330-8500
http://www.unos.org/
Upbeat
e-mail: dmarsh@cris.com
US Government Dept of H&HS "Health Web Site"
http://www.healthfinder.gov
Vital Link
http://www.medicalnews.com/nephrology/index.html
Weather, channel 4, NBC
http://www.nbc4.com
World Children's Transplant Fund
e-mail: WCTF@asf.org
World Health Organization
http://www.who.ch/
WRTC (Washington Regional Transplant Consortium)
http://www.wrtc.org
e-mail: jeff@wrtc.org
michelle@wrtc.org
World-Wide Web Virtual Library
http://golgi.harvard.edu/biopages/medicine.html
Yahoo Medical Index
http://dir.yahoo.com/Health/Procedures_and_Therapies/Organ_Transplants/
UNOS
URL:http://www.unos.org/
The United Network for Organ Sharing maintains some of its historical and statistical
information on its web site. You can get the latest numbers on transplants performed
and the details on numbers of patients waiting for transplants by type of transplant.
Information available includes:
There are far too many other resources to list here. But if you really want to have some "fun", try doing an Internet search.
One great search engine is Alta Vista, which can be located at: http://altavista.digital.com
Use the keyword "transplant" if you dare, but be prepared for thousands
of hits. We guarantee you'll find lots more than you bargained for (unless,
that is, you're in need of a hair transplant, too!).
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