Fibrolamellar Forum – Guidelines

Welcome! The Fibrolamellar Forum is private, searchable, online discussion board where members can ask questions, find information and share experiences. We hope that the forum will become a useful “filing cabinet” for knowledge and be used by the broader fibrolamellar community to share experiences and information, stay up to date on fibrolamellar research progress, and much more. We want the postings and discussions here to be easily accessible to other users over time through the use of its search features, categories, and tags.

Because our users are often facing stressful personal situations, we ask that everyone adhere to the following guidelines for participation in the community:

Foster respectful discussion

Please treat the Fibrolamellar Forum like you would a walk in a public park. We are a shared community resource — a place to ask questions and to share knowledge. We want this to a “clean and well-lighted place” for all.

Keep it friendly, relaxed and helpful

While this is a closed community, please keep the language, links, and images safe for family and friends. Items to keep in mind:

  • Be civil. Don’t post anything that one would consider offensive, abusive, or hateful.
  • Be encouraging and appropriate. Respect people as individuals by keeping your tone positive and your comments constructive. As a diverse community, there will be many different ethnicities, cultures, religions, and beliefs represented here, and all should be respected.
  • Keep it clean.
  • Respect our platform. Don’t post spam or otherwise vandalize this forum.
  • Focus on improving the discussion in some way, however small. If you are not sure that your post contributes to the conversation, please think over what you want to say.

Avoid giving medical advice

Do not attempt to give medical advice at any time, or pass judgment on decisions others have made or are contemplating. Please respect the choices of other members.

Personal fundraising not allowed

It is not permitted to solicit or advertise in the forum for personal fundraising purposes. This includes any personal fundraisers, whether personal requests or through sites like GoFundMe, JustGiving, etc. These posts will be removed.

However, it is permitted to promote Fibrolamellar Cancer Foundation Ambassador pages and other fundraisers that benefit fibrolamellar-related non-profit organizations.

Keep things tidy

Please take the effort to put topics in the right place, so that the group can spend more time discussing important issues and less time cleaning up. Please:

  • Don’t start a topic in the wrong category. A question posted in the correct area will be easier for everyone to find!
  • Don’t cross-post the same item in multiple topics.
  • Don’t post replies with no content, please use “likes” instead.
  • Don’t divert a topic by changing it midstream – if you want to start a new discussion please initiate a new topic.
  • Don’t sign your posts — every post already has your profile information attached to it.

Be agreeable, even when you disagree

You may wish to respond to something by disagreeing with it, which is fine. But remember to only criticize ideas, not people. If you disagree, please provide reasoned counter-arguments that improve the conversation.

Share, share, share

We are a very small community, so your participation matters. Everyone’s experiences and knowledge is critically important! Help us influence the future of this forum by choosing to engage in discussions that make it a valuable resource for all.

The forum includes tools that enable the community to collectively identify the best contributions: bookmarks, likes, replies, edits, etc. Use these tools to improve your own experience, and the experience of everyone else.

If you see a problem, flag it

This site is made up of members who came to learn from each other. However, there may still be instances of inappropriate conduct. If you recognize any violation of these guidelines, please notify the moderators by flagging it. With flagging, action will be taken, either automatically or by moderator intervention.

Moderators have special authority — they are responsible for this forum. With your help, moderators can be facilitators, not just janitors.

In order to maintain the forum, moderators reserve the right to remove any content and any user account for any reason at any time. Moderators do not preview new posts; the moderators and site operators take no responsibility for any content posted by the community.

Post only your own content; including links to other content is fine

Please remember that you may not post anything digital that belongs to someone else without permission.

Help make the site better

We want this to be useful for the fibrolamellar community. Please let us know what you think and how we can help improve your experience. If you have questions or ideas about how things should work in the Fibrolamellar Forum, you can open a new topic in the site feedback category and let’s discuss it! If there is an urgent issue that can’t be handled by a topic or flag, please contact the staff via the staff page. You can also contact us at info@fibrofoundation.org with any suggestions, issues, or concerns.

Terms of service

Your use of the Fibrolamellar Forum is also subject to the Terms of Service describing your (and our) behavior and rights, as well as the Privacy Policy.


We hope you enjoy the Fibrolamellar Forum and take full advantage of all it has to offer. We look forward to participating with you!

Please read our Fibrolamellar Forum User Guide, for some helpful information and instructions for getting started.