Being able to share rare cancer support and treatment information with others around the world is one of the most exciting benefits of the Internet. People you have never met from countries you may never have visited will be able to read your posts and gain valuable knowledge, and you will be able to do the same from theirs.
In order for everyone to get the most support from our forums, it is mandatory for you to post on the forums within your first 30 days. Below, you will find the Rules and Guidelines for posting.RULESRule 1: You Must Post To Remain Active
When you have completed your registration process and have been placed in a private forum for your rare cancer, you have 7 days to submit an introductory post. If this is not completed, within those 7 days, your account may be removed
. The basic concept of the forums is to share
information and support. This and the security/privacy of our current members have made it necessary to implement this 7 day limit. Also, if your account is inactive for very long periods of time, or communications sent to your email address are returned as undeliverable, your account will be removed. If you do not know how to change your email address, you can simply contact the 'admin' through a private message --> Here
.Rule 2: Be Polite
This seems obvious, however many folks can sometimes forget that common courtesy goes a long way to lending respect to both you and your opinions. Just because you don't see the other readers' faces doesn't mean they don't have feelings and won't be hurt by rude comments. When you read something that you find silly, rude or insulting, first assume that perhaps there is more to the post than you initially thought. Re-read it and keep in mind that tone and inflection is difficult to convey in written form. It may be that the person is attempting a joke or is exaggerating on purpose. It is best to politely request clarification before accusing someone of something offensive.
If after clarification you still disagree with the person, then politely outline your points. Try to avoid name-calling or even implying insults wherever possible. These tactics generally only inflame a situation and lead to what are known as "Flame Wars." Whenever a flame war starts it usually ruins a perfectly good discussion. Others will lose interest in the thread and the discussion board in general if this kind of interchange is found here.
It also should go without saying that swearing, profanity, inappropriate sexual references, etc. should not be used. Remember that we may have readers of all ages. Rule 3: Stay on Topic
If you are a rare cancer suvivor and you are here helping others; after awhile you may feel as though you have developed friendships with some group members. This is probably one of the most rewarding parts of participating in this type of communication. It is only natural to occasionally want to share information with your friends that is "Off Topic" (i.e. not related to the subject matter of the forum you are in).
While it may at first seem harmless to post a bit about off topic (OT) subjects, it can become a slippery slope. If others join in on OT posts then soon everybody has sent the discussion threads on so many tangents that it is difficult to follow the original topic. People come to the Rare Cancer Alliance forums looking for immediate support and medical information. It is not polite to post off topic items frequently. Rule 4: No Spam or Solicitations
While Spam may be a tasty meat product (yum!); on the Internet "spam" refers to invasive, unsolicited information. Posting advertisements or services is simply not acceptable. Any users trying to advertise on these forums will be immediately banned and all posts will be deleted.
Personal solicitation for donations is also not allowed. We cannot completely verify the legal use of these monies, so we cannot allow this type of posting. If you have a particular research fund or fund raising effort that allows the monies to be placed in a general fund for all patients, please contact us for inclusion on the website and forums.Rule 5: No 'List-Mining'
You may NOT
post content on the forums and/or email or private message members to sell products or services and/or redirect members to other online groups or online support services. To clarify, DO NOT
post, email, or PM any of these - links to websites that sell products or services; links to websites that ask for personal donations; links to other support groups or websites that utilize links to other support groups. If you do, your posts may be removed (or edited) and your account may be suspended or removed permanently. Posting of information about geographically and physically local, 'face-to-face' support groups is acceptable. If you would like to direct our members to your products, services, or support groups; we suggest that you utilize search engine technology. Rule 6: Confidentiality Is Mandatory
This forum was designed to be a safe, private, way for cancer patients to share information and support. When your register, you agree to honor the confidentiality and privacy of other members. All content of these forums is protected under US copyright laws. Posts, or partial posts, by other members should never be re-posted or publicly displayed on any other medium. Duplication of posts, or partial posts, will be considered a copyright infringement and will be prosecutable. GUIDELINESGuideline 1: Disclosure Of Personal Information
We advise you not to post anyone's home address, e-mail address, or phone number to the list. Remember that this information will be displayed to many people on your forums, potentially, for years to come. We cannot be held legally responsible if you choose to disregard this guideline.Guideline 2: Faith-Based Posts
We realize, for many, your Faith is a very large part of your life. Although many of us may agree with your religious leanings; there are also many who have a faith different than your own, or choose not to participate in organized religion. Simple comments, such as - "I will be praying for you" are acceptable, but we ask that you limit your posts containing faith-based content.IF YOU BREAK THE RULES…Problems, Troublemakers, and Flaming
While we all have the best of intentions occasionally mistakes happen. Unfortunately there will be people who sometimes try to goad others into acting in a manner they would otherwise avoid. Many of us are very passionate about helping others with rare cancers and can get on each other's nerves occasionally either by accident or on purpose. When this happens sometimes things are posted that are later regretted. This happens to the best of us, and with a quick apology you can usually repair any damage done.
In addition to the occasional loss of temper, there are a few folks out there who seem to enjoy causing trouble. They will post inappropriate information in various forums and make comments with intent to start flame wars, add spam, etc. Actions We May Take
To keep such occurrences to a minimum, the Rare Cancer Alliance forums have administrators and moderators who read the forums and try to keep things polite and on topic. They also have the ability to delete and edit posts and to ban (remove) users.
If posts occur that break any of the above rules the moderators may take some or all of the following actions, often without warning:
Posts that are in the wrong forum will be moved to the correct forum. If your post just disappeared - DON'T PANIC! Check the other forums to see if it was moved.
Threads that get long because they have wandered off topic will be locked and may be removed. People can still read the thread, however no new posts can be added. If you'd like to continue your ideas start a new thread with an appropriate title in the correct forum.
Posts that contain profanity, insults, blatant attempts at baiting a flame war, racial slurs, or any infraction of the above rules. will be locked and/or removed. Occasionally whole threads may have to be deleted if they degenerate into a situation described above. Repeatedly posting such comments may result in temporary or permanent suspension of posting privileges.
Spam posts (ads, attempts at attention, etc.) and posts will be deleted immediately. Offenders will be removed from the forums.
'List-Mining' posts will be either deleted or edited by the moderators and the offenders or anyone suspected of list-mining activities may be removed from the forums.
Duplication or reposting of any portion of a post on these forums, to any medium outside of these forums, will be considered an illegal copyright infringement. The offending party will be removed from the forums, immediately, and legal actions may be taken.
Off Topic Posts: While these should be avoided, the occasional off topic post is generally allowed as long as it reasonably contained. Be sure to mark any off topic post with "OT" so readers know what they are looking at. Note that off topic posts should be RARE and kept to a minimum. People who repeatedly post off topic and abuse this may risk suspension of posting privileges. CONCLUSION
Remember that posting on this forum (or any Internet forum, for that matter) is a privilege, NOT A RIGHT. Please treat it that way. If your posts are locked or deleted due to one of the issues outlined above do not be offended or take it personally. Evaluate what you posted and think about why it might have been deleted. If you have any questions as to why your post was deleted or you lost posting rights taken away, please feel free to contact the administrator(s) of these forums.