APS Friends & Support Forum ~ Brought to you by the APS Foundation of America  Home 

Are you looking for Support for Antiphospholipid Antibody Syndrome, APS, APLS, APLA, Hughes Syndrome, or Sticky Blood?

Well you've come to the right place! This is an private forum for people who have Antiphospholipid Antibody Syndrome, friends, family, and caregivers.

If you register and join us you'll find a wealth of information and support on the inside as well as the latest APS and related news articles that you may not be able to find elsewhere. You'll also find friendship.

We strive to ensure that our participants have a safe place that is friendly and supportive because we know how horrible this disease can be.

Come to a place where people understand what you're going through because they've been there themselves. If you join our FREE private forum, you will finally be "home" where people can relate.

We hope that you'll join us on the inside and we cannot wait to get to know you better!


**We moved to Facebook!! Make sure you like us at: https://www.facebook.com/groups/APSFriendsandFamily/ **

 Moderated by: Tina, Staff, Heidi
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Our Forum Rules  Rating:  Rating
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 Posted: Monday August 17th, 2009 02:44 am
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Staff
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Joined: Sunday September 11th, 2005
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This document is designed to clarify various responsibilities of forum participants here at the http://www.apsforum.com
 

The Greeters & Moderators of the APS Friends & Support Forum try hard to edit or remove reprehensible messages as soon as possible. However, it is impossible for them to review all the messages.


By clicking "I have read and agreed to the rules" box when you joined the forum, you:

      -  acknowledge to have fully read these rules;
      -  commit yourself to respecting these rules;
      -  agree to the Terms of Service;
      -  grant the Administrator(s) & Staff of this forum the right to delete, move or edit any discussion subject at any moment as they see fit.

Board-Wide Policies


1)      Forum rules

          a)      Posts are to be made in the relevant forum. Users are asked to read the forum descriptions before posting. Users consistently posting to the wrong forum may be given a warning (see policing below). Do not create duplicate posts

          b)      Please treat each other with respect even if you do not agree with their opinions. Flaming  or abusing users in any way will not be tolerated.  It is O.K. to disagree, but express yourself in a civil manner, without being abusive and using excessive profanity. 

               i)        *Please keep in mind that subjects such as religion and politics are not to be debated on this forum*  Our more in depth policy can be located below.

          c)       If you are not supportive of people and judgmental then you are not welcome here. You will be banned on first offensive.  You agree, through your use of this service, that you will not use the APS Friends & Support Forum to post any material which is knowingly false and/or defamatory, inaccurate, abusive, vulgar, hateful, harassing, obscene, sexually oriented, threatening, invasive of a privacy, or otherwise volatile of any law.

          d)      Members are asked to not act as "back seat moderators". This includes telling people not post under certain circumstances, telling people that they must behave a certain way on the forum, telling other posters that they have violated the rules, etc.  If members note a post on the forum that is inappropriate they are welcome to bring it to the attention of a greeter or moderator via PM. Only do this if a greeter or moderator member has not replied within 6 hours. Members who consistently "act" as moderators may be banned.

          e)      This forum is a private forum.  What happens on this forum, stays on this forum.  Support groups are confidential.  Please respect the privacy of others.  Plain and simple.  Privacy considerations: all posts to the APS Friends & Support Forum are considered to be copyrighted to their author and must not be forwarded to other lists, forums or other persons without the express permission of the author. The APS Friends & Support Forum may not be re-transmitted or re-broadcast by anyone in accordance with copyright laws.

          f)       Private Messages are just that, private.  Sharing them in whole or in part on the main forum will not be tolerated.   Any abuses of the private messaging system will result in removal of the offending user and possible ban.

          g)      Honesty is expected. Sharing of identities, fake identities, fake stories of illness and/or deceptive practices will not be tolerated.   You may not impersonate another board member or create an account specifically for the purpose of provoking other users. Also, accessing or using someone else's account or attempting to access another poster's account is strictly prohibited. If you engage in this type of behavior, you will be banned from the APS Friends & Support Forum permanently.

          h)      Bashing or threatening the owner(s), moderators/greeters, hosts, or participants of this forum on another forum, on this forum or privately if brought to the attention of the board will result in loss of forum privileges.  Bashing or threatening the owner(s), moderators/greeters, hosts, or participants of other forums will not be tolerated.  This, too, will result in loss of forum privileges.

2)      Posting on the Forum

          a)      You have 6 months, from the date you registered, to post your full introduction, or your screen name will be deleted to conserve bandwidth.  Reminders will not be sent out.  This is your responsibility.

          b)      Keep in mind that this site is used by people of all ages.  We don’t allow obscene, racist or sexually explicit language. Personal attacks are not permitted. We reserve the right to remove posts that are abusive, hateful, or defame or insult anyone. We also reserve the right to remove posts that are off-topic or not in English.

          c)       Posts that use offensive graphics will need to be removed. Tasteful signatures only please! *What is offensive to some, may not be to others, so ultimately the staff has the final say on signatures and avatars. We reserve the right to remove any that we find to be questionable without notice.*
 
          d)      Members should post in a way which is consistent with "normal writing". That is users should not post excessive numbers of emoticons, large, small or coloured text, etc. Similarly users should not SHOUT or use excessive punctuation (e.g. ! and ?) in topic titles or posts. Users consistently abusing this will be warned.

          e)      Members should use an appropriate, descriptive title when posting a new topic. Examples of bad titles include; "Help me!", "I'm stuck!", "I've got an error!", etc.

          f)       Members do not have the ability to edit or delete posts. Please keep this in mind as you post on the forum – don’t post anything that you don’t want people to read. If double posting or mistakes occur, please PM a greeter or moderator and they will take care of the editing for you.

          g)      Stay on topic (Actually, we all wander off topic a little from time to time - but at the end of the day, these Forums are meant for discussing APS & related items). If you want to post on topics other than listed, then please do so in the Off-Topic areas provided on the forum.

          h)      When posting  be sure to cite your sources with URLs and back up your claims with URLs.  We reserve the right to remove or correct any links or articles posted.  We also reserve the right to remove any inaccurate, uncited claims.  We follow strict rules under the HONCode and therefore, all articles, claims and excerpts must be cited to their original source and must include the URL it was found at.  If you post information from another site, show the address of the site in order to respect the work of their administrators and our HON Code.  We will remove information/links that poses a conflict of interest to the APS Foundation of America, Inc.  Remember, extraordinary claims & testimonials require extraordinary proof.

          i)        No SPAMming - anyone who posts spam will be banned on the first offense.  People who routinely make such posts will face loss of forum privileges.  Good manners online means that you don’t post the same note more than once. The online word for posting many times on one topic is “spamming.” We don’t allow it.

          j)        No selling or advertising on this forum unless you have been given prior written approval from the APS Foundation of America, Inc.  No solicitations or advertisements are allowed. This includes advertisements for your business, your own online endeavors or the latest get-rich-quick scheme. However, you may post links to your personal sites (blogs, social networking, etc), within reason, in your signature profile.

          k)      It is illegal to harass or threaten anyone. We take threats, harassment and stalking very seriously. Posts that might be construed as such may be deleted and / or made available to the proper law enforcement officials.  You may not suggest or encourage illegal activity. The APS Foundation of America, Inc and the APS Friends & Support Forum will assist law enforcement officials in any investigation of such activities.

          l)        Do not use this forum for the harvesting of names, email addresses for personal use or to recruit for other forums or organizations.  This will not be tolerated. Participants in violation of this rule will be immediately banned from the forum. 

          m)    You must respect the privacy of individuals.  Please do not post phone numbers, addresses, email addresses, social security numbers or any other private information on the forum.  We discourage users from posting such information.  This information will not be removed by Moderators or Staff.  It is your responsibility to protect your identity.  Remember you will not have the ability to edit your posts, so please think hard before you post your information.  If you would like to talk to each other privately, please use the PM function.
 
          n)      Usernames may not be email addresses or URLs. URLs to competing websites are not allowed in a users profile or signature.

          o)      The greeters and moderators reserve the right to edit or remove any post at any time. The determination of what is construed as indecent, vulgar, spam, etc. as noted in these points is up to Team Members and not users.

          p)      Posting a “goodbye cruel forum” or suicide note (any post stating that you intend to leave the site because you are unhappy with our policies/administration; ie, "You guys are mean, I'm taking my ball and going home") will result in your immediate banning. We assume that since you are leaving, you will no longer need access to your account anyway. No exceptions.

3)      Religions, Politics, & Alternative Medicines

          a)      Religion

                    i)        There is a time and a place for all discussions. We have provided a faith and inspiration area on the main forum. You will have access to this folder once you have access to the main forum.

                    ii)       We ask that ALL religious discussions be held in this area of the forum.

                    iii)     We hope that people will use discretion and realize that not everyone shares the same religious beliefs. Phrases such as "my thoughts & prayers are with you" and "God Bless You” and the like are acceptable on the main forum. 

                    iv)     While we have many forum participants who are spiritual, we also have forum participants from other areas of the world who may or may not believe in the same god that you do.

                    v)      We must respect each other's religious beliefs, even if we don't understand them or share their beliefs.

                    vi)     Since we have had major religious debates and issues, we now have no other choice but to enforce these rules.  If the problem continues, we will implement a "No religion" rule.

                    vii)   Please, keep religious chat to the religion area of the board so that the forum participants who wish to can participate and those who don't can avoid that area. We're just trying to keep harmony amongst the forum participants.

          b)      Politics

                    i)        Politics are not to be discussed or debated on the forum

                    ii)       At this time we do not have an area on the forum to discuss political topics.

          c)       Alternative Medicines

                    i)        The APSFA & APS Friends & Support Forum as a whole does not promote the use of alternative medicines; however we do recognize that there are some APS patients who do.   Participants should be mindful about being too enthusiastic about alternate medicines as the majority of them have not been proven to be beneficial and may raise hopes unnecessarily. 

                    ii)       Many may actually be harmful or cause death. 

                    iii)     We do not want to completely ban the discussion or mention of herbal or alternative medicines on the forum; however, we will if things get out of hand. 

                    iv)     When discussing alternative medicines we ask that you follow these guidelines:

                              (1)    Always cite your sources. We cannot stress this enough!  Do not make extraordinary claims without providing some sort of link as proof.  We do expect these sources to be from legitimate sources, such as medical journals – not a quacksite.  If you do not back up your claims, your post will be removed.

                              (2)    Do not claim you have found a "cure" for APS. There is no cure for APS.

                              (3)    Remember that your post may influence people, which is why you need to back up your claims with legitimate sources of information.  We would hate for someone to read your claim, take it as word, and start taking it and have an adverse reaction or cause death.

                              (4)    Fully expect other participants of the forum to debunk your theories or to disagree with your claims & testimonies, even if you have cited your source.

                              (5)    Do keep an open mind and try not to get defensive. It is the job of the forum greeters and moderators to provide both sides of the coin to ensure members are educated. It is to ok agree to disagree.

                              (6)    Please remember that everyone's situation is different and what works for you might not be appropriate for someone else. We are not doctors and participants should refrain from diagnosing or prescribing.

4)      Policing

          a)      The APS Friends and Support forum operates on a case by case policy depending on the rule and situation surrounding the offense.

          b)      Please be familiar with our new policy (8/09) regarding how warnings/bans will be handled:

                    i)        The member in violation of the forum rule(s) will be placed on a temporary, read-only ban and will be sent a Private Message or email informing them of this.

                    ii)       A Moderator will contact them via Private Message or email to discuss the situation with them.

                    iii)     At this point the Moderator will determine how to handle the situation – whether to warn, temporary ban, or permanently ban the member.
 
                    iv)     The Moderator will then Private Message or email the member to inform them of the decision.

                    v)      The decided action will be taken.

                    vi)     All communication regarding rule violation will take place in either Private Messages or emails between the member and the Moderator.

          c)       Public arguing in regards to the sites rules or enforcement will not be tolerated. Any arguing with team members after having received a warning will lead to an immediate read-only ban.

          d)      Insulting, and disrespectful behavior via a PM will not be tolerated.

          e)      Any attempt to circumvent a temporary ban will lead to that ban being made permanent. Circumvention includes re-registering under a non-banned username.

          f)       Permanent bans are a last resort and thought is given before implementing them. All permanent bans are final and will not be reversed.

5)      Miscellaneous, But Still Important

          a)      Remember, a post expresses the views of the author of the post, not necessarily the views of APS Friends & Support Forum or the APS Foundation of America, Inc.

          b)      The use of the forum is a privilege, not a right. If one does not follow all of the rules and moderator(s)/greeter(s) or staffs’ instructions, one may be banned from using the forum.  Banned parties will not be allowed to rejoin the forum.

          c)       We reserve the right to remove any post or user from the APS Friends & Support Forum. When posts are deleted, it’s usually because they violate one or more of the rules. Repeated violation of these rules may result in the suspension of your posting privileges or permanent banning from the message boards.

          d)      These ruled may be changed or updated at any time and without notice. Please check back frequently. Ignorance will not be an excuse.

          e)      If you give your personal information to a host or other member and later threaten to hurt yourself or others, we reserve the right to contact appropriate authorities; however, no guarantee is made that someone will contact emergency personnel for you.  We are not equipped to handle these types of crisis situations.  You should contact your local law enforcement agency immediately.

          f)       If you use the forum or chat room, you are solely responsible for your own communications, the consequences of posting those communications, and your reliance on any communications found in those areas. APS Friends & Support and its licensors are not responsible for the consequences of any communications in the forum. 

          g)      As a reminder, the Internet is not an anonymous space; nor does the right of free speech prevail.  Most support forums keep files of all interactions. Remember that no support forum is fully private. The chat server & support forum keeps files and can identify your IP. We reserve the right of informing your internet service provider and/or legal authorities of any malicious or threatening behavior.  We will forward the files to your ISP who can pinpoint the exact address of where the PC you are using is located.  IP addresses of each poster are recorded, just like they are recorded a large majority of the other support forums, eLists and chat rooms.

The Founders, Administrator(s), Assistant(s), Helpers, Greeters & Staff of this forum are not medical doctors.  APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only. Additionally, while APS Foundation of America, Inc. frequently updates its content, medical information changes rapidly, therefore some information may be out of date.

If you think you may have a medical emergency, call your doctor or 911 immediately.


APS Foundation of America will be building a database with this information for future mailings. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. Your information will be kept confidential and not sold to or shared with any third parties.

If you use the forum, you are solely responsible for your own communications, the consequences of posting those communications, and your reliance on any communications found in those areas. APS Friends & Support and its licensors are not responsible for the consequences of any communications in the forum. If you give your personal information to a host or other member and later threaten to hurt yourself or others we reserve the right to contact appropriate authorities, however, no guarantee is made that someone will contact emergency personnel for you. We are not equipped to handle these types of crisis situations. You should contact your local law enforcement agency immediately. If you think you may have a medical emergency, call your doctor or 911 immediately.

Thanks everyone for your cooperation!



____________________


Please Email us at staff@apsfa.org if you have any questions or concerns.

Past Newsletters can be found here: http://www.apsfa.org/newsletters.html
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APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only. Additionally, while APS Foundation of America, Inc. frequently updates its content, medical information changes rapidly, therefore some information may be out of date.

If you think you may have a medical emergency, call your doctor or 911 immediately.

APS Foundation of America will be building a database with this information for future mailings. Please note that we will be listing all donor or purchaser's names on the Donor page of our foundation site. If you do not want your name listed, please contact us to opt out. Your information will be kept confidential and not sold to or shared with any third parties.

If you use the forum or chat room, you are solely responsible for your own communications, the consequences of posting those communications, and your reliance on any communications found in those areas. APS Friends & Support and its licensors are not responsible for the consequences of any communications in the forum or chat room. If you give your personal information to a host or other member and later threaten to hurt yourself or others we reserve the right to contact appropriate authorities, however, no guarantee is made that someone will contact emergency personnel for you. We are not equipped to handle these types of crisis situations. You should contact your local law enforcement agency immediately. If you think you may have a medical emergency, call your doctor or 911 immediately.

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