About Our Forums

These forums are designed for patients, caregivers, and medical professionals to connect, ask questions, and share experiences. The forums are moderated by the publisher of this site, Bionews, Inc.

Each of the main forums is public, so any posts in them can be seen by anyone. However, we’ve created three separate groups as an offshoot of the forums, two of which are private. There is a private group for patients and another for parents and caregivers. You must be a member of these groups to view and create posts. There is another group for medical professionals, which is public. Individualized descriptions of each forum and group are provided under their titles.

There is also a private message feature available to all users. If you’d like to message another group member or someone in a forum discussion, simply go to their profile and click the “private message” button.

Please direct questions to forum moderators. Thanks for joining the discussion here. Happy posting!


Bionews, Inc. Community Code of Conduct

Welcome to the Community!

This forum exists to provide a place for information, constructive discussion, and feedback about navigating life with health challenges.

We strive to be a welcoming space and the rules are in place to make the forums a supportive and meaningful place for everyone to visit and connect with other members of the forum community. Members and moderators of the forum can flag and report any posts which they feel are in violation of the rules below.

If you break the rules, your access may be suspended or removed.

Please note: This forum does not substitute for trained medical advice or treatment. If moderators suspect you are seeking medical advice or treatment, they will suggest that you contact your medical professional and recommend additional referral resources, if appropriate. Bionews, Inc. is not responsible or liable for any advice given by other members of this forum.

  • Please respect others.

The forum’s purpose is to provide a platform for the exchange of ideas. Occasionally, conflicts may arise when people voice opinions. Be courteous when disagreeing with others. Debating the opinion is appropriate, however, disrespectful words about the originator of the opinion are not allowed. Disrespect can be construed as flaming, trolling, harassing, profanity, abusive language or abbreviations, personal attacks, racial, religious, ethnic, sexual slurs, or similar behavior/language.

  • Flaming is defined as posts that are designed to personally berate or insult another. This includes accusations of scamming, bullying, etc. Please report this behavior directly to support.
  • Trolling is defined as deliberately posting derogatory, inflammatory comments/threads to bait other users into responding. 
  • User posts declaring “Moderator notified” or “Needs thread lock” are discouraged. If a thread is in violation of the forum rules, use the “notify moderator” button or send a private message to a moderator or administrator.

The above are just a few examples of behavior that is not tolerated on the forums. Basically, play nice and get along. Thanks!

  • No inappropriate talk. 

Remember, minors come here for information and support too! We do not allow discussion that encourages or constitutes behavior that does not support a safe and comfortable environment for all users. The forum is not a place to chat about:

  • Encouragement of illegal activities. 
  • Topics or language that constitute bullying, vigilantism, and engagement in any conduct or activity that is threatening, harmful, harassing, abusive, vulgar, hateful, defamatory, lewd, sexually explicit, inflammatory, profane, racially or ethnically objectionable, religious or political. Do not engage in any manner that encourages inappropriate, disrespectful, abusive, or unlawful conduct, or otherwise make use of the forums an uncomfortable experience for anyone. This includes both clear and masked words, phrases, or images.
  • Discussions of topics that use graphic language, tone, or images in terms of self-harm or violence to others.
  • Comments that glorify or promote self-harm or suicide will not be allowed.

We ask that our forum members remember to treat each other with courtesy and respect, and remember we do not all have the same expectations when it comes to what is acceptable.

  • No profanity. 

Thanks in advance for keeping the language on the forum clean and not profane so minors can visit our site. Intentional misspellings of swear words, using letter/symbol substitutions, or any other means to bypass our censoring are also not allowed. You will only get one warning for this. After a repeat of the behavior, you will be banned from the forums.

  • Never reveal your personal information, nor anyone else’s.

The best way to stay safe online is to NEVER share your phone number, address, email, or passwords. Please do not disclose your, or anyone else’s, private information.

  • Nonconstructive posts are prohibited.

Examples of nonconstructive posts: 

    • Continually posting about the same topic, repetitively posting the same text, or making nonsensical posts without substance.
    • Bumping posts by repeatedly posting in them just to keep them near the top of the forums.
    • Creating threads/posts to “petition” or “lobby” for features, additions, changes, or other issues. You may post suggestions and/or ideas to the boards, but you may not create a “petition” for others to sign. 
    • Continually bringing up the same topic in different threads or as an off-topic post in official threads.
    • As a courtesy to others before beginning a new thread, please look to see if an active thread on that topic has already been established using the Search feature. If so, place your comments there instead. Multiple threads on the same subject clutter up the forum needlessly and many good ideas may be lost. Use the Search link to keep discussions about one topic to one thread only.
    • Negative feedback can be very useful, provided that it is presented in a civil, objective manner. Tell us what you don’t like and why and how you feel it could be improved. Posts that are insulting and rude may be deleted, no matter how valid the ideas behind them may be.
    • A rant is a post that is long-winded, redundant, and filled with angry, nonconstructive comments. A free exchange of ideas is essential to building a strong sense of community and helpful in the development of the forums and site, but rants are disruptive and incite flaming and trolling. Please post your thoughts in a concise, clear manner and avoid rambling tangents.
    • False obituary threads are considered highly improper, and knowingly posting false news of a user’s real-life death may result in a ban of both your forum account.
    • Threads that make threats or use other combative language are not allowed.
    • Private communication between forum members, staff, and users is not to be made public on these forums or by any other venue. 
  • Respect privacy.

Please keep private conversations private. You are not permitted to publicize any private correspondence without permission. As such, warnings and bans are not to be discussed on the forum. Such matters shall remain private between Bionews and the user. Questions or comments concerning warnings and bans will be conveyed through e-mail or private messaging. Likewise, discussions regarding moderator actions are not permitted on the forum. If you have questions regarding a post or thread that has been removed or subject to other moderation, please contact a moderator to discuss it.

  • Impersonating another forum user, moderator, volunteer, administrator, or Bionews, Inc. employee is prohibited. 
  • You may not post advertisements. 
  • No recruiting for studies or clinical trials.

To cut down on the potential of spam and scams, and to be compliant with FDA regulations that necessitate Institutional Review Board approval of recruitment, only studies and clinical trials moderated by Bionews Clinical may be recruited for on our forums. To learn more about engaging our communities, contact [email protected].

  • No proxy posting; no account hopping to evade suspension.

Posting on behalf of a suspended user is not allowed. Working around a ban through other people’s accounts or secondary accounts to continue posting is also prohibited. You are personally responsible for your conduct on the forums. Threads designed to announce, appeal, or contest a banning will also be removed without notice.

  • No legal action threads.

Using the forums or PMs for encouraging, promoting, endorsing, or inciting any kind of legal action against anyone is strictly prohibited.

  • User-generated content.

We do not host screenshots, signature pictures, or other images on this message board. You are more than welcome to link to images hosted in other places, as long as they are of an appropriate and non-offensive nature and/or do not otherwise infringe the intellectual property rights of any party. Below are examples of what is prohibited.

  • Images which are: sexually explicit, harmful, threatening, abusive, defamatory, obscene, hateful, racially or ethnically offensive; obscene or contain vulgar language; images that illustrate/show illegal activity.
  • Avatar icons are allowed as long as the images are below 20kb in size. Avatars that are disruptive or found to be in poor taste — in Bionews, Inc.’s sole discretion — will be removed.
  • Links to inappropriate images will be removed and your forum account may be shut down.
  • Copyrighted, proprietary images, trademarks as well as images that do not belong to you (i.e. photographs or artwork that are used without permission of the creator) are also forbidden.
  • Signature images are allowed but they must be limited to 500 x 100 pixels and fewer than 15kb.
  • Advertising the sale of items on the forums is prohibited. Selling anything for real money, be it digital items, services, or physical products is not allowed. 
  • Respect Bionews Inc.’s discretion.

Do not complain about getting banned and do not make another account to circumvent a ban. Do not complain about other users being banned, in the forums or on profile pages of other users. Also do not complain if a moderator removes a message you posted. We trust our moderators, and if they’ve removed a message, they had a good reason.

Community Managers, Moderators & other Bionews, Inc. Staff

The staff members you will see most frequently posting on the forums are the community managers and moderators. We enforce the Code of Conduct and respond to threads and posts, whether it is to address an issue or simply to have fun.

If you don’t see us responding, it isn’t because we are ignoring you. Sometimes we don’t have a good answer, or we are looking for an answer or we cannot comment on the issue at the time.

We also have other work we have to do that isn’t on the forums so if you don’t see us around, we are working on something else for you!

Zero-tolerance policy.

Immediate suspension or bans from the forum can result from any of the following: the posting of pornography; discriminatory remarks which are sexually explicit, harmful, threatening, abusive, defamatory, obscene, hateful, racially or ethnically offensive; excessive obscene or vulgar language; posts which discuss or illustrate illegal activity; providing links to sites that feature any of the aforementioned.

Proprietary forums.

This community is a private message forum. All message board content is allowed at the discretion of Bionews, Inc. The company reserves the right to remove any message board content at will without notice for any reason.

Changes to these Rules and Regulations

Bionews, Inc. may revise these Rules and Regulations at any time by amending this page. You should check this page from time to time to take notice of any changes.

Small print

The forums are a private message forum administered by Bionews, Inc. The company reserves the right to edit or remove any message board post or other content at will without notice for any reason. Posting privileges are provided as a courtesy that can be rescinded at any time, at our sole discretion. By using the forums, you agree that Bionews, Inc. has a royalty-free, worldwide license to your posted text, graphics, or other content for its business purposes.

You must have an active account to post on the forums. Your forum account is linked to your email. You are responsible for adhering to the forum rules of conduct. If your forum posting privileges are suspended or banned, your account will be reviewed and may be subject to further action. Bionews, Inc. reserves the right to suspend your access to these forums at any time for reasons that include, but are not limited to, your failure to abide by this Code of Conduct.

Bionews, Inc. and its Community Team reserve the right to evaluate each incident on a case-by-case basis, and have full discretion when addressing any behavior that they determine is inappropriate. Any finalized decision may be based on the offending poster’s full history on the forums, as applicable. Should you wish to discuss any disciplinary measures against your account or report a violation, you can email [email protected].

Thank you for taking the time to read the Code of Conduct! The Bionews, Inc. forums should always be treated as environments where everyone can feel comfortable. These rules are intended to be a set of guidelines that help create and maintain those environments, not a definitive list of every eventuality we may need to take action on.

If you’re unsure how these guidelines affect you, please PM a moderator or send this form: