Fibrolamellar Forum – User Guide and FAQs

Welcome to the Fibrolamellar Forum!

The Fibrolamellar Forum is a private, searchable discussion board where fibro patients and caregivers can ask questions and exchange information. This easy-to-use platform was built to address the specific needs of the community and will make it easy to find and engage information with individuals who share similar experiences and concerns. The forum allows the posting and sharing of text entries, URL links, Word files, .pdfs, PowerPoint files, pictures, video files and audio files. 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.

Fibrolamellar Forum members will be able to:

  • Get questions answered, either by posing a new question or searching past discussion threads
  • Share their experiences and learn about how others have dealt with similar situations
  • Access educational resources
  • Provide feedback on how to improve our site and services and help us design new programs to meet your needs.

Please also review the Community Guidelines, Terms of Use and Privacy Policy that outline the rules for the access and use of these services.

As a new user, we hope you will find this site easy to navigate and intuitive, but here is some guidance to get you started:

Here are some terms that will be helpful to keep in mind as you use the forum:

  • Topic: A collection of messages grouped together into a conversation. Each topic has a title, is listed in a category, begins with an “original post”, and includes all replies in chronological order.
  • Post: Each individual element of a topic is referred to as a post. Each post has its own author. Posts can be moved to a different topic if necessary, or even become the start of a new topic.
  • Original Post (or OP): The first post in any topic.
  • Category: The primary means of organizing topics. Each topic is placed in exactly one category. Categories can have subcategories as well. Categories have permissions which can restrict which users can create, reply, and see its topics. Users can also configure notification preferences per category or even mute them as explained below.
  • Tag: A marker placed on a topic to describe it. While a topic can only have one category, it can have multiple tags. New tags can be created by moderators or some users.
  • User: Fibrolamellar Forum is a private site. Users must be registered and logged in to read or create posts, or record any actions such as bookmarking, liking, tagging, and flagging.

To access search, the menu, or your user page, use the icon buttons in the upper right corner.

How do I register?

Users can register and log-into the Fibrolamellar Forum from the main navigation at the site, or directly at

Important notes about the registration process and registration information requested:

  • An active, validated, unique email address is required for registration and use of the site
  • Log-in can be completed using the email address or the user name you select in the registration process
  • The other information requested during sign-up (including full name, address and fibrolamellar-related questions) is used by the staff to screen site membership requests. This information is not visible to other members of the Fibrolamellar Forum unless you choose to share it.

How do I update my profile or account data?

Once logged-in follow these steps:

  • Click on your profile picture in the top right hand corner.
  • Click on the “person” icon underneath your profile picture.
  • Choose the “Preferences” item from the dropdown menu to open your profile
  • From here you can:
    • Add profile pictures and manage your password (under the “Account” tab)
    • Update your profile/address (Under the “Profile” tab)
    • Manage the notifications you receive (Under “Notifications” – see below)
    • Change the default home page and text size (Under “Interface”)

How do I delete my account?

You can delete your account by clicking on the “Delete my Account” button on the bottom of the “Preferences” page described above.

This will delete all required and optional account data. Note:

  • All FIbrolamellar Forum contributions are retained, so they can continue to be used by the broader community.
  • Your publicly displayed user name will be changed to “Removed Account”

Other registered users on the forum can view a list of users and their activity on the site by clicking on the “hamburger menu” in the upper right corner of the site. Other users can view:

  • Your self-selected user name (along with your picture/avatar if you choose to add one)
  • Your activity on the site (topics you initiated, replies posted, likes received, visits to the site, etc.)

Other (non-moderator) users cannot view:

  • Your email address, unless you chose to post it
  • Your actual name and address, unless you choose to post them
  • Your replies to the fibrolamellar-specific questions asked in the registration process, unless you choose to post that information in a topic

Using topic lists

By default, the Fibrolamellar Forum homepage will show all the latest conversations in the community but you can filter this list in a number of ways:

  • By category: in the menu line, click the ‘all categories’ title and a list of all the categories appears.
  • By tag: in the menu line, click the ‘all tags’ title and a list of all the tags used will appear.
  • By level of activity: if you click on ‘Top’ the conversation topics will be listed in order of most activity (views and replies) for a specific time period. You can choose whether this is for all time, or select a specific period such as quarter, month, week or just today.
  • By what’s ‘New’ to you: New topics are those created in the last 2 days that you have not opened yet. New topics show a small green dot next to the topic title.
  • By what topics are “Unread”: Unread topics are those that you have previously opened and read for at least 4 minutes, and that have new posts (replies) submitted to them. Unread topics show a number in a colored circle indicating how many new posts are in the topic.

See who is participating in a topic

There are several ways to see who is involved in topics. On the homepage, you will see a selection of avatars (profile pictures) of users involved in a particular discussion, including:

  • the user who started the topic (always the first photo);
  • some of the most active participants;
  • who created the most recent post (usually the last photo).
  • in some cases, the first photo has a blue border or blue halo to indicate that the original poster is also the most recent poster

The box at the bottom of the OP tells you; who created the post, when the post was published, the number of replies and views in the topic to date, plus a display of the avatars of the most frequent participants.

See all users’ activity

From the “hamburger menu” in the upper right corner, clicking on “Users” will show a list of all users by user name, plus a summary of their activity within the forum.

Conversation flow

Click a topic title and read down the list of replies in chronological order, following links or previewing replies and quotes as you go. Use your mouse to scroll the screen, or use the timeline scroll bar on the right which also shows you how far through the conversation you’ve read. On smaller screens, select the bottom progress bar to expand it.

Sometimes conversations are clearer if topics are split, where posts are moved to a more appropriate topic, or two related topics are merged. If a post is moved, a link will appear that will allow readers to jump to that comment wherever it has been moved to, and the person who posted it will also be notified.

Returning to topics you’ve already visited

Selecting a topic title will take you to the last post you read within the topic. To enter at the top ↑ or bottom ↓ instead, click the reply count or last reply date.

Topics above the light red line on a list are new or updated since your last visit. If you have read all the way to the end of a topic, the title will be light grey instead of black.


Press any “Reply” button to open the editor panel at the bottom of your browser. You can continue reading (and even search or navigate to different topics) while you compose your reply.

The forum shows all posts in the order they are published. However, it still gives you lots of ways to follow the context of conversations. To reply to a specific post in a topic, clicking the grey “Reply” button at the end of each post and your reply is linked to that post.

  • If your reply is the next one published after the post you are replying to, this will appear next in chronological order
  • If yours is NOT next, then two things happen after your post is published:
    • Your post will include a new link in its header with an image to show what this is ‘in reply to’ – clicking this link displays that previous post for context next to your reply
    • The original post includes a count of replies at the bottom – clicking this link displays the content of the replies


Drafts will automatically be saved as you write. If you navigate to a different topic, the editor might disappear. To open a draft, return to the topic you were replying to or click the highlighted bar at the bottom of your browser, and the editor will reappear with your draft.


To insert a quote, select the text you wish to quote, then press the Quote button that pops up. There is no need to quote the a whole message, it helps to be specific. Repeat this for multiple quotes even from different posts and different users. The quoted text will point to their original source.


To notify someone about your reply, mention their name. Type `@` to begin selecting a username. This search will also search the name fields in case you don’t know a particular username.


To use standard Emoji, just type `:` to match by name (continue typing the name of the emoji you are looking for). Alternatively you can open the Emoji menu, by clicking on the emoji symbol at the top of the reply box.

Oneboxes (Link Previews)

Onebox converts your web links into useful preview excerpts that help inform readers about the target before they click through. To create a onebox, simply paste any link into a post on a line by itself:

Once you’ve pasted the link, onebox visits the destination page and checks for OpenGraph or oEmbed tags, so the link will show up in your post with text and image preview of the content. However, if you want the link to show up as a plain, unadorned raw link, place it in < brackets >


Alternately you can place a space before the link, or any characters after the link.


Your reply can be formatted using simple HTML, BBCode, or Markdown:

This is <b>bold</b>. This is [b]bold[/b]. This is **bold**.

The following table includes some more markdown formatting tips:

TypeOr… to Get
# Heading 1Heading 1
Heading 1
## Heading 2Heading 2
Heading 2

> Blockquote  Blockquote
* List
* List
* List

– List
– List
– List

● List
● List
● List
1. One
2. Two
3. Three
1) One
2) Two
3) Three
1. One
2. Two
3. Three
Horizontal Rule

Horizontal Rule


Within the forum, there are 2 types of posts or topics:

  • Regular posts
  • Wiki posts.

Regular posts are designed to remain “as is” within the forum. The original author can edit their post (to correct typos and errors) within the first 24 hours after posting. Once edited, other users cannot see the original version that was posted.

Wiki posts are a special type of post that can be edited by any user on the forum. This feature could be useful for topics or postings that are viewed as a collaborative effort among a number of participants. However, currently, we have not broadly enabled that capability. If you are interested in creating a wiki post, please contact a moderator or administrator, and they will help you set one up.

How can I recognize a wiki post from a regular post?
When a wiki post is established, users will notice that the Reply button has been de-emphasised in favor of the Edit button.

Clicking on the pencil produces no effect unless the post has been modified.
In this case, the number of changes made since the creation of the wiki will also appear firefox_2018-01-25_14-19-39

  • clicking that icon, a user will be able to see the revisions that have been made to the post, and will also see the Edit Wiki buttons:

Please note that moderators and admins can potentially edit any posts that are created. This may be done for two reasons:

  • a belief that some aspect of the post violates the site’s guidelines, and the moderator believed a minor edit was preferable to deleting or hiding the entire post. (You will be notified if this occurs).
  • … or more commonly, the title of the topic may be edited to help other users better find the information posted.

There are action buttons at the bottom of each post:

  • Use the “like” button to let someone know that you enjoyed and appreciated their post.
  • Click the “link” button to grab a copy and paste-able (permalink) link to any reply.
  • Hit the “…” button to reveal more actions.
  • “Flag” a post to privately let the author, or the site staff, know about a problem.
  • “Bookmark” a post to find it later on your profile page.

Whenever someone replies to you, quotes your post, mentions your username , or even links to your post, a blue number will immediately appear over your profile picture. When you have been sent a Personal Message you will receive this in your Inbox and a green number will appear over your profile picture to the left. Click your profile image to scroll through all your notifications.

You can optionally receive all these notifications as ‘push notifications’ to your desktop browser. Simply allow the site to send you notifications through your browser when it asks permission. Don’t worry about missing a reply—you’ll be emailed any notifications that arrive when you are away. If you want, you can get notified about other things happening on the site as well, either at the category or topic level.

  • Topic notifications: You can change your notification level for any individual topic via the notification control at the bottom left side of each topic.
  • Category notifications: Notification level can also be set per category. To change any of these defaults, see your user preferences, or visit the category page, and use the notification control above the topic list, on the right side.
  • Tag notifications: Notification level can also be set per tag. To change any of these defaults, see your user preferences, or visit the tag page, and use the notification control above the topic list, on the right hand side.