Quick Start Guide



See below for our Quick Start Guide and other resources to help you use and navigate this MarrowCommunity site. Still have questions? We have you covered! Just email CommunityHelp@aamds.org

Let's Get Started...

NEWLY REGISTERED?: Here's what you need to know

If your account was migrated from the PNH Support Group or Marrowforums:
If you created a "New User" account, and your account was NOT migrated over:
  • IMPORTANT: We review and approve all "New User" accounts.This will take a day or two, so please be patient.
  • Once you are approved, your account will be activated, and you will have access to join individual communities.
  • You will a receive an email notifying you of your approval.
  • You will also be automatically be added to the "AAMDSIF MarrowCommunity Open Forum" and "AAMDSIF News & Announcements" communities.
  • While waiting consider reading through this Quick Start Guide or completing your profile.

STEP 1: Complete Your Profile

Tell us about yourself. By filling out areas like "Relationship to Patient" and "Disease of Concern" you can help other members find you and get conversations started. This also allows us to better customize your experience and the content you see. Don’t forget to upload a picture of your smiling self. This really helps add to the community and helps others get to know you. VIEW YOUR PROFILE

NOTE: You can easily "View Your Profile" using the drop down menu in the upper right side of the screen, next to "Terms and Conditions." This menu also allows you to view all communities you are in and any emails in your MarrowCommunity.org email box.

STEP 2: Set Your Privacy & Communication Settings

You have control of what other members can and can't see. Don’t want everybody to see everything? No problem. Just go to your profile and choose the “My Account” drop down. There you will see "Privacy Settings" where you can customize who can see what. For example, for your email address, you have the following choices for who can see it: Members Only, My Contacts, Only Me or Public. VIEW YOUR PRIVACY SETTINGS

NOTE: Under the "My Account" tab on your Profile, you can also:
  • Set your "Email Preference" (e.g. Whether or not you receive emails at all from the community)
  • Set your individual "Community Notifications" preferences (e.g. Whether you received emails from each community in Real Time, as a Daily Digest or get No Email.

STEP 3: Join Communities that Interest You

Go to the “Communities” drop down menu and choose "All Communities" to see all the communities available for you to join. You can choose to narrow your view to “Communities I can join” or other options by using the filter options near the top of the page. VIEW ALL COMMUNITIES

You can also view all communities you are currently members of by choosing "My Communities" from the "Communities" drop down. By default, all members are in the MarrowCommunity Open Forum. VIEW MY COMMUNITIES

Within each community you can also get an idea of the community’s activity like the number of posts, files uploaded to the group’s resource library and current number of subscribers in the group.

Once you’ve looked around, subscribe to any and all of the communities that interest you by clicking on the “Join” button. You’ll then be prompted to specify how you want your messages from the community’s discussion group to be delivered to you:
  • Real time: sends you an email for each community post
  • Daily digest: sends you an email each morning with the previous day’s posts
  • No emails: You will receive no email notifications. You can read and reply to posts through the community only. 
NOTE: If you DO NOT see a “Join” button on a community, you either belong to that community already, or the community is private.

STEP 4: Make New Friends or Find Old Ones

Use the "Directory" to search for members by name or email address. Or dig deeper by using the “Advanced Search” function to look for people by areas of community type, location or profile characteristics they share with you. Once you’ve found the person(s) that you’re looking for, you can view their profile, send messages or add them as a contact directly from the search results page. VIEW THE MEMBER DIRECTORY

STEP 5: Join a Conversation or Start Your Own

As discussed above, all communities feature integrated online and email discussions.

When viewing a discussion post on the on MarrowCommunity.org or within an email, you can:
  • Reply to Discussion: sends your response to the entire group.
  • Reply to Sender: send a private response to the author of the post.
  • Recommend the post
  • Mark the Post as Inappropriate
From an email you can also:
  • View Thread : Takes you to MarrowCommunity.org to see all the posts in that particular discussion in chronological order.
  • Reply to Group Online: This takes you to the online post where you can reply
  • Forward: Allows you to forward this post to other MarrowCommunity.org members
To start a new discussion in one of your communities you can use the “Post a Message” link within each community or post directly from the emails you receive using the “Post Message” link. You can also view a compiled list of all messages for all communities to which you belong by going to the "Browse" drop down on the main menu and choosing "Discussion Posts."   VIEW DISCUSSION POSTS FROM ALL YOUR COMMUNITIES

STEP 6: Search the Resource Library and Add Items

In the "Resource Library" on the main menu you can search all the resources posted by anyone in your communities. You can also add documents, video links, links to online research articles and lots more by selecting the "Create New Library Entry" button. VIEW RESOURCE LIBRARY

Want to include an attachment to a discussion post? Here's how:
  • Add the subject line
  • Click the “Attach” button at the bottom
  • Select the file you want to attach or simply drag and drop
  • Click “Upload"
All attachments will be automatically included in the Resource Library for that community.

STEP 7: View Upcoming Events

We keep a list of upcoming events in the "Events" section. VIEW UPCOMING EVENTS

Events include, but are not limited to:
  • Conferences
  • Webinars
  • Fundraising and Awareness events
  • Professional conferences