Welcome! This guide is designed to help you navigate the National Brain Tumor Society’s online community, My.BrainTumorCommunity.Org. Join our community to share information, connect with others, learn more about brain tumors, and get your questions answered.
Below are the sections to this guide:
1. About the Community
2. Introduction/Getting Started
3. Navigating the Community
4. Privacy Settings
5. My Stuff: Profile, Settings, Inbox, Friends, Groups, and more!
6. Using our Forums/Discussion Boards
7. Using Blogs
8. Joining a Group
9. How to Contact NBTS for more information
Click here to watch the "How-To User Tutorial Webinar"
1. About the Community
My.BrainTumorCommunity.Org, the NBTS online community, was designed to help brain tumor patients, survivors, and their families get connected—to information and to each other. This space was made for you. You can create a profile, upload photos, share your story, read and create blogs, join groups, and engage in our discussion forums. My.BrainTumorCommunity.Org is about creating a world where you can learn, share, and connect with others in the brain tumor world. It’s easy to get started!
2. Introduction/Getting Started
Finding the Community
You can find the community by typing My.BrainTumorCommunity.Org in your web browser.
How-To User Tutorial Webinar
Click on the “Help” tab at the top of the MyBTC webpage once have logged in. You can view a 20 minute recorded webinar hosted by NBTS on how to navigate this community.
Browsing the Community
You do not need to register to see the community. Most of the content is available without logging in. However, if you want to contribute content (i.e. to post or reply to messages, create a profile, comment on a blog, or start your own blog), you will need to register (on your first visit) and then log in.
Registering in the Community
On the community page, click the “Register” button. You will be taken to a registration form. Once you have completed this, click “Done” at the bottom of the page to complete your registration. You will receive an email that contains your username and password. Please keep this for your records.
Logging In
On future visits, click “log in” from the community page and enter your username and password. You can also click the “login” link in the header.
Forgotten usernames and passwords can be retrieved by following the instructions on the User Login page. If your login information does not work, please contact 800-934-2873 or email tech_support@braintumor.org.
3. Navigating the Community
The main way to navigate the community is through the header on each page. Each button will take you to a specific section of the site.
Navigation Tabs
• My Stuff – Use this button to access your “My Stuff” page where you can update your profile, check your inbox, access your blog, and manage your groups and friends.
• Community – This button will take you to the Community landing page, where you can see recent blog entries, posts to the Discussion Forums and other featured content.
• Discuss – Use this button to access the Discussion Forums.
• "Headquarters" Blog – This button will take you to the NBTS Headquarters Blog, where each week NBTS staff will feature a different topic of interest.
• Groups – Use this button to view the different Groups that are available in the community. This is a great way to find others like you!
• Blogs – This button will take you to a list of blogs in the community that were recently updated.
• Invite – Use this button to invite other people to join the community. You’ll just need to enter their email address, write a short message, and click “Send”.
4. Privacy Settings
By default, profiles are marked as “Public” when you first sign up. To edit your privacy settings, click on the “Account Settings” link which appears at the very top right hand corner of your screen. (You can also access your Account Settings via your Profile page).
Public – This means that all your content is available to everyone who visits My.BrainTumorCommunity.Org, and will appear in search results. The information that is available includes your avatar, profile, blog, friends, and groups.
Friends Only – This means that your profile is only available to people you have approved as Friends. Your username and avatar will still appear in search results, but people will not be able to see details of your profile unless they are your friends.
Private – This means that all the information you enter is viewable only to you. Your username/avatar will not appear in search results, your profile will not be visible to others, and you will not be listed among the members for groups you have joined.
5. “My Stuff” : Profile, Friends, Groups, and more!
The My Stuff page is basically your home base for managing your profile, your blog, and your connections to others (messages, friends, groups, etc.).
These are several of the links that will appear on the left-hand side of the page:
• Profile – Your profile allows you to share information about yourself with others. It is your decision what you share in your profile. Filling out the profile information is optional. You can control who sees your profile by using the Privacy Settings. By default, profiles are marked as “Public” when you first sign up.
Setting up your Profile
Click on “Profile” to go to your Profile Info page. From here, you can enter as little or as much information as you would like. Under “Profile Settings,” you can change your privacy settings and manage which notifications get emailed to you.
Adding a Profile Photo/Choosing an Avatar
A profile photo (also called an avatar) is displayed throughout the site to help people connect to each other. A photo is optional. If you do not upload a photo, your profile will automatically be assigned a default image as the avatar. To upload your own photo for your avatar, click on “Update your photo” underneath the avatar on your Profile Info page.
• Inbox – The Inbox is where you can check to see messages that people have sent you.
It’s worth noting that the inbox will only allow you to receive incoming messages. To send an outgoing message to someone, you must find that person in the community, go to their page, and click “Send [Name] a message” on the right side.
• Friend Requests – The Friend Requests link allows you to see friend requests and accept or decline them, as well as to manage your friends and invite people to join the community. These same functions are also available in the Friends tab.
• Bulletins – Bulletins are mass messages that go out to everybody in your “My Friends” list. It is a useful tool to announce something to all your friends at once, like your new blog or updates about your latest doctor visit.
• Friends – The Friends link takes you to a page called “My Friends” where you can view all your friends. Use this tab to manage your friends, such as deleting someone or changing whether they receive bulletins. You can also invite people to join the community by creating an invitation and entering their email addresses. Once they have joined, you can send them a Friend Request to join your list of friends.
• Blogs – The Blogs link takes you to the “My Blogs” page where you can create and manage a blog. See Section 6 for more information about blogs.
• Photos – The Photos link takes you to the “My Photos” page where you can upload photos and manage comments about the photos.
Photo moderation
You are welcome to post photos that you want to share with people on our community provided they are a) photos of you and/or people who have given permission to have their photo posted and b) in accordance with our user agreement. The photos will be visible according to your privacy settings.
Photo publishing
Once you upload a photo, it must be approved by an administrator before it will appear on your page. Photos are typically approved on a daily basis.
6. Using the Discussion Forums
Discussion Forums (also known as “message boards”) let you read, post, and reply to messages and questions from other users. Click on the “Discuss” button, which will take you to a page with a list of Forums. The different forums group discussions about related topics together. All users are welcome on all forums and you do not need to be logged in to read posts on the forum. However, to reply to a post or post something new, you must have registered and be logged in (See “Introduction/Getting Started”).
With each forum discussion, you may read, post, and reply to other posts, with the exception of the “Archives” discussion which is read-only. We ask that you keep your posts related to the forums so it will be easy for others to find them. Posts that are very off topic may be deleted or moved to another board.
Terminology Used in the Forums:
• Forum – Contains discussions about a similar theme, such as "Caregivers, Family and Friends" or "Connecting with Others"
• Topic – A discussion that relates to a forum heading. For example, under "Caregivers, Family and Friends" your topic might be "Keeping track of medications".
• Posts – Individual entries that create the discussion thread about a particular topic.
Creating a Signature:
A signature is automated text that will appear at the end of your posts in the Forums (it does not appear elsewhere in the Community). Some people like to include information about their tumor or a favorite quotation. To set your signature, click “Add a Signature” on the top right of the discussion forums page. A window will pop up that says, “Create Signature.” Type in your signature and press save. You can change your signature at any time.
To Read a Topic or Post:
Click on the blue discussion forum title (for example, “Glioblastoma” or “Connecting with Others”). This will take you to page that lists all the topics in that discussion forum. Click on a topic to read all the posts about that topic.
To Reply to a Post:
You must be logged in to reply to a post. To reply, click the “Reply” button, which appears at the end of each post. Type your reply and click “Post” (you can also preview your reply, if you’d like). Replies will be posted immediately.
To Create a New Topic:
To create a new topic, enter the appropriate discussion forum by clicking on its title. Then click the “Post a Topic” button and type your message. Type your message and then click “Publish Topic” to post your message immediately.
To Format a Post:
The discussion forums site offers advanced options for formatting posts. For basic formatting (e.g., font, bold, etc.), the easiest approach is to select the text you want to format and click on the appropriate button in the tool menu [i.e. “B” for bold]. You may see html (computer programming) language appear around the text that you selected. If so, ignore the characters that appear. The formatting should work just fine.
RSS Feeds
If you have an RSS reader, you can utilize the forums RSS feed by clicking on the RSS icon in the forum of your choice (it looks like a little orange square). When you add the feed to your RSS reader, any new discussion topics added to the forum will appear in your reader at that time.
Searching the Forums:
Look for the word “Search Discussion” on the right side of the screen. Type in your search term and hit Enter on your keypad to bring up a list of results.
Reporting a Message:
If you come across an inappropriate message, please click the “Report Abuse” button next to the message (looks like a yellow triangle with an exclamation point in the middle). These reports go to the system administrator and will be reviewed.
7. Using Blogs
The “Headquarter’s” Blog
The official NBTS blog, the “Headquarters” blog is written by Patient Services staff and created to share information about topics that are important to you. Each week, we’ll focus on a new topic with a featured story from a survivor or caregiver, a Q & A with health professionals, cool resources we want to share, and more.
At the end of each post you’ll find a link to add a comment (if you are logged in). Please don’t hesitate to leave a comment and tell us what you think about that day’s post or a topic you would like us to cover. We want to hear from you!
Reading and Commenting on the Headquarters
You do not need to be logged in to read a blog post. However, you do have to log in to post a comment.
Subscribing to the Blog
RSS feeds allow you to subscribe to a blog and import blog content into a blog reader or to get the content via your email. To access a blog RSS feed, click on a blog entry and look for the orange icon at the top-right of the entry.
Community Blogs (a.k.a. blogs written by YOU)
Many brain tumor patients want a way to share their experiences and their stories. And newly diagnosed patients often want a way to learn about others’ experiences. This community allows you to have your very own blog, where you can write about your brain tumor treatment, life after your tumor, or whatever else you want to share. Include photos about your experience or of you family. This is your space. You will even have a unique web address where your family and friends can come read your blog.
Creating my Blog
Log in and click on “My Stuff”. Click on “Blogs” in the menu on the left (towards the bottom. Click on “Create Your Blog Now”. Choose a title, write a short description of your blog, and click on “Create the blog now!” to get started.
Managing my Blog
Go to “My Stuff” and click on “Blogs” in the menu on the left. This will take you to a page where you can add entries, view past entries, view comments, and change your blog’s settings, using the menu on the left.
8. Finding and Joining a Group
Groups are a way to get connected with people like you. Group members can post photos to the group, participate in the group blog, and send messages to other group members. Viewing the group’s members is a great way to find other people with whom who may have something in common.
The “Groups” button will take you to a list of Groups that are available. Click on the Group’s name to see more information about the group. Click on “Join this group” to become a member of the group. Depending on the group’s settings, there may be a delay until your request is approved by the group’s administrator.
9. How to Contact NBTS with Questions, Concerns, etc.
For technical questions or if something is not working properly, please email tech_support@braintumor.org.
For non-technical questions, suggestions or feedback about My.BrainTumorCommunity.Org, please email info@braintumor.org.
For questions related to you or your loved one’s brain tumor or anything you’d like to share with the Patient Services Team, please email info@braintumor.org.
We hope this is helpful and welcome to our community!
- NBTS Patient Services Team
