WELCOME - LO-Wiki

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Survey research > A critical analysis of the literature on the Internet and consumer health information. > Online Research Scholars > EHealth Research > WELCOME

1 Example 1: BLADDER-CANCER-CAFE=
- 1.1 Intro
- 1.2 Rules & Guidelines
2 Example 2: PROSTATE
3 Example 3: KIDNEY-ONC
4 Example 4: NHL

[edit] Example 1: BLADDER-CANCER-CAFE=

[edit] Intro

Hello, and welcome to Bladder Cancer Cafe. We hope that the reassurance that you are not alone can help relieve some of the anxiety that a cancer diagnosis brings.

The address to send posts to the list is: BLADDER-CANCER-CAFE@LISTSERV.ACOR.ORG

Our affiliated resource and information site, Bladder Cancer WebCafe, can be found here: http://blcwebcafe.org.

It is highly recommended that new members review the info compiled there.

A good place to start is the section especially for the Newly Diagnosed: http://blcwebcafe.org/newlydiagnosed.asp

There are comprehensive pages providing information on all aspects of using this mailing list, we ask you to review the recommendations in the "List Info" section as well: http://blcwebcafe.org/listinfo.asp

The list is not intended to provide medical advice, but the sharing of personal experiences with the various procedures and treatments from the perspective of the patient, as well as information our members have found helpful in understanding their own treatment and support options.

If you are in need of medical advice you should contact qualified practitioners in your local area. It is in your best interest not to seek advice from unqualified non-medical professionals.

Please contact us if you receive unsolicited medical advice or unwanted advertising from someone who has taken your address from the list. Listowners Wendy Sheridan and Linda Weyand can be reached at this address is: bladder-cancer-cafe-request@listserv.acor.org

When writing for the first time, tell us about yourself, as well as your condition. It may be helpful to mention things like age, sex (if your name is 'Pat' for example), any details you wish to share about past or current treatments, and place of residence/treatment. Some people feel more comfortable reading the posts for a while before joining in, and you may want to browse the archives in order to aquaint yourself. This is best done by starting with the most recent messages and working backwards. The list archives can be found at: http://listserv.acor.org/archives/bladder-cancer-cafe.html

You will need to get a password before being able to access the archives. If you run into difficulties, there is an in-depth explanation to be found here: http://blcwebcafe.org/listinfo.asp

[edit] Rules & Guidelines

Bladder Cancer Cafe has rules and guidelines, and is a monitored by active, experienced members.

[edit] What we welcome

We are interested in your personal experiences.
News and information on the subject of bladder cancer.
Questions and answers are always welcome on the list
Helpful hints and hard earned wisdom are appreciated
Discussion of health care policy and practice in whichever country you live is fine, but keep in mind that the list is international and that other list members' situations may be very different.
If forwarding links to websites, please include a summary of the information to be found at the URL, and please check the link to make sure it's correct.
If replying to a message it's very much appreciated if an attempt is made to edit the previous message to include the most pertinent parts. This saves bandwidth and downloading time, which costs money.
If forwarding copyrighted material, we ask that you send the link with a summary rather than the whole article, which is a breach of copyright laws..

[edit] What is not welcome

To maintain privacy and safety, please do not post private addresses or phone numbers to the list and do not post the phone numbers of physicians. Posting the phone numbers and addresses of institutions is fine.
If you are sending a congratulatory or sympathetic message to one person, we ask you not to automatically post your reply to the whole list. Chit Chat is also best done off the list. Out of respect for those trying to juggle busy lives with the added burden of a cancer diagnosis, please try to keep the topic in mind when posting the whole list.
Many of us try to sort our e-mail by the 'Subject Line' on the e-mail. This is difficult when people post letters to the list by replying to an old letter and using the same subject line. Please pay attention to the subject line.

[edit] Things we definitely don't want to see on the list

Advertising, or commercial postings are not allowed and could lead to the removal of your subscription. This is defined as: "To proclaim the qualities or advantages of a product or business so as to increase sales." Sending web sites that proclaim undocumented and unscientific evidence of cures for the same purpose, advertising, are included in this ban.
Insulting or annoying messages. If you regularly annoy list members, we will remove and ban you without notice.
No attempt at treatment conversion will be tolerated. The goal is support. Fellow members are undergoing a wide variety of treatments, with a wide range of differences in the stage of their cancer journey.
Things you've received in your e-mail and want to pass on. This includes jokes, virus warnings, information about bills being debated, 'inspirational' messages, and chain letters.
Religion discussion is not welcome on the list. Please don't post circulating prayers or anecdotes. There is a Christian cancer forum on ACOR, Cancer Patients Christian Online Support Group at: http://listserv.acor.org/archives/cpcos.html and a second more general cancer list, FAITH, at: http://listserv.acor.org/archives/faith.html
Causes or crusades. We'd love to hear about your campaign to get a drug approved, to get a law changed, a treatment or diagnostic tool approved, or to get a company to change an unfair policy, but please conduct the campaign off-list and give us periodic updates.
Surveys are fine, but please conduct them off-list: get people to send responses to you privately, and post a summary when you are done.

[edit] Note for Researchers

Note: If you are a researcher looking for input, permission is needed from the listowners before posting to the list: bladder-cancer-cafe-request@listserv.acor.org

A word of caution; it would be wise to delete mysterious files without reading them. Although most warnings about viruses and worms are hoaxes, some mailing lists have received unwanted attachments that can be destructive or pesky. To prevent problems, do not open files that have an EXE, BAT, COM, REG, DLL, or VXD suffix.

Thank you for joining Bladder Cancer Cafe. We look forward to getting to know you and hope to provide the support you need.

[edit] Example 2: PROSTATE

[edit] Example 3: KIDNEY-ONC

[edit] Example 4: NHL

Retrieved from "http://lo-wiki.acor.org/index.php/WELCOME"

From LO-Wiki

Contents

[edit] Example 1: BLADDER-CANCER-CAFE=

[edit] Intro

[edit] Rules & Guidelines

[edit] What we welcome

[edit] What is not welcome

[edit] Things we definitely don't want to see on the list

[edit] Note for Researchers

[edit] Example 2: PROSTATE

[edit] Example 3: KIDNEY-ONC

[edit] Example 4: NHL

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