General | Top
Q: What is my username/password?
A: Your login credentials must use an email address that is already on file with Global Genes. If you have registered for a webinar or event with us use that email address. If you are not in our database already you can request an account here
You will need to login as if "I forgot my password"
Click the blue Login button (top right) and then select “Forgot Password”
Enter your email address
You’ll get an authentication code by email
Enter code and then set your new password, Submit.
Once you have logged in you’ll be routed back to www.rarecommunity.org on the home page.
It will still appear as if you are NOT logged in. Just click the blue Login button and you’ll be in.
If you have forgotten your login credentials or need assistance with your login information, please click here
Q: How do I update my contact information?
A: On your profile page, please select the pencil icon next to "Contact Details" in the left column. However you can not make changes to your email address. If you enter a change to your email address, our database will persist in using the original email we have stored. If this is a change you need contact us to make the change. You might also want a second user account using the other email address.
Q: How do I control what information is visible in My Profile?
A: Please navigate to your profile page, then select the "My Account" tab and choose "Privacy Settings" from the drop-down menu. This will let you control what information is visible to whom. After you’ve made changes, click the “Save Changes” button at the bottom of the page.
Q: How private or public is what I share?
A: Discussion posts, replies and library file uploads are visible to "members" only. A member is anyone who has logged in to rarecommunity.org and accepted the terms and conditions. All members can access items in our General Discussion Zone. If you post discussions, replies and library files to one of our smaller communities (example Compassion Med Students) only other members of that smaller community can view those items. You may choose to post anonymously. Details on your profile page can be set as viewable by the public (anyone), members, or only your direct connections/contacts.
Q: How do I add Google Translate to the Chrome browser?
A: Google search : Chrome Store
On that page search : Google Translate, click add to Chrome, then click add again. A blue “G” icon appears in your Chrome toolbar near the top right. Clicking this offers you a link to “Translate this page”. Also when you select any text on a site that is not in your default language the “G” icon appears. If you click it you’ll see the text translated.
Q: How do I set my default language?
A: In the Google Chrome web browser go to Preferences (sometimes called settings), then click Advanced, then click Languages. Click the down arrow near Languages in the list on this page. Here you can add a new language. The first language in your list is what Google Translate will translate other languages into.
Contacts / Connections | Top
Q: How do I find other members?
A: By using the blue Quick Link button “Find Someone”
The Directory lets you search for other users based on:
- First and/or last name
- Company/Institution name
- Email address
Q: How do I add contacts to my contact list?
A: There are several ways to add contacts. When you perform a search in the Directory, you will see an “Add as contact” button to the right of each person in your search results. Just click this button to send a contact request. If you click through and view an individual’s profile, you can click the contact request link to the right of his or her profile picture.
Q: Why should I add contacts to my contact list?
A: Creating this virtual address book makes it easy to send your contacts messages through the community site to stay in touch, ask questions or even build a referral network. Additionally, when you view another member’s profile, you’ll be able to see any contacts you have in common. You can also choose to let your contacts view certain demographics in your profile that others can't.
Communities / Discussions | Top
Q: What are communities?
A: Communities allow you to participate in discussions and share resources with other members.
Q: What communities do I already belong to?
A: Go to “Communities” in the main navigation bar. Select “My Communities” to view the communities you currently belong to.
Q: How do I join/subscribe to a community and the affiliated discussion group?
A: Click on “Communities” in the main navigation and click on “Communities I Can Join” in order to see a list of available communities. Click on the community that you wish to join and simply click "Join," then choose a delivery option for posts (Real Time, Daily Digest or No Email).
Q: How can I control the frequency and format of emails I receive?
A: Navigate to your profile and click on the "My Account" tab. Choose "Community Notifications" from the drop-down menu. On that page, you can view and control your subscription options.
For each discussion, you have the following delivery options:
- Real time: sends an email every time a new message is posted.
- Daily digest: sends one email to you each day, consolidating all of the posts from the previous day.
- No Email: allows you to be part of the group without having emails sent to you. You can still post and read others’ messages by logging into the community site.
- Consolidated Digest: Allows you to combine multiple communities into one notification email.
Q: How do I leave a community or unsubscribe from a discussion?
A: Go to your profile and click on the "My Account" tab. Choose "Community Notifications" from the drop-down menu. Here, you will see a list of available communities and those to which you’ve subscribed. Select "Leave Community” under the Actions column for the discussions you wish to leave.
Q: How do I respond to others’ posts?
A: To respond to a discussion post, please navigate to the discussion post and click “Reply" to send your message to the entire community. To send a message to the only author of the post, please select “Reply Privately” (located in the "Reply" drop-down). We recommend replying privately for simple comments like “me, too” that add little value to the overall discussion; and replying to the entire community when you are sharing knowledge, experience or resources that others could benefit from.
Q: How do I start a new discussion thread?
A: On the site, go to “Participate" > “Post a message.” From an email for a particular discussion group, you can use the “Post Message” link located at the top of the discussion email. Each community also has a unique email address. Save that to your address book, and easily start a new post like you would a regular email.
Q: I’m having trouble viewing the HTML email messages. How do I fix this?
A: If images are not appearing, it is likely that your email client is set to suppress images. This should be something you can change in your security or viewing options. If you would rather receive text-based email, go to your profile page and click on the "My Account" tab. Choose "Community Notifications" from the drop-down menu. Select the “Plain Text” format option for each of the discussions you are subscribed to.
Q: Can I search for posts across all the communities?
A: Yes, please enter a keyword in the search bar located in the main navigation. To refine your search results, select one or more facets from the menu on the left side.
Q: How do I see a listing of all of the posts to a specific Community?
A: Locate the community you are interested in viewing from the appropriate communities page. Click through the community's landing page, then click on the “Discussions” tab. If you see a post you’re interested in, click the subject line which will take you to the entire thread.
Libraries | Top
Q: How do I find resources that may have been uploaded by other members?
A: If you know which library the resource might be located in, find the affiliated community via the My Communities page. Click through the community's landing page, then click on the “Library” tab . If you do not know where the resource might be, enter search terms in the main search box the same way you might enter search terms into Google or another search engine.
Q: How do the libraries get populated?
A: The libraries are populated in two ways:
1. When you include an attachment in a discussion post, the system automatically places it in the affiliated library.
2. You can also upload documents directly to a library by using the “Share a File” link found under “Participate” in the main navigation or "Create New Library Entry" button on any community's library page. Library resources are not required to be associated with a discussion thread.
Q: How do I upload a file?
A: Select the “Share a File” link found under “Participate” in the main navigation or "Create New Library Entry" on any community landing page. Please note that uploading a document is accomplished by completing a few steps, and each step must be completed before you can move on to the next:
- Choose a title for your document, and include a description (optional). Select the library to which you’d like to upload it, and select a folder to which you’d like to upload it (optional). Then, choose an Entry Type (most will be Standard Files, but be cognizant of any copyright licensed material). Once you have completed these steps, please click “Next.”
- Upload your file.
- Select “Next” if you want to further describe your files and/or add tags to your file. Otherwise, please click “Finish” to post your library entry
Q: What kind of files can I upload?
A: The system supports dozens of file types including hyperlinks, standard files (Word, Excel, PowerPoint), webinars, images and YouTube videos.
Q: What are the “tags” for?
A: Tags are great way to organize and categorize content on your site. Tags can be applied to blogs, library entries, events, and glossary terms. Tagged items are prioritized in the search results. Please hashtag your posts, especially with things like specific rare disease names.
Q: I am being asked for my password, but I never set one up.
A: Our first time user sign in experience may be confusing since most other new member sign ups ask for a password to be entered twice. For ours you just enter it once. Even on your first time.
Q: I can’t log in, or get a blank white screen when I do.
A: Sometimes this results when you have an older log in page saved in your bookmarks. This is more likely if you made the book mark prior to June 30, 2021. Delete that bookmark and use rarecommunity.org
Q: I requested a password reset but never got the email with my passcode.
A: One likely reason is the email went to your spam folder, please check there.
Other tips which may help:
1) clear your browser cache (or switch browsers, or use incognito mode)
2) use only lower case in your email address
Q: When I log in I get an error message “insufficient privileges”.
A: This can happen by design if you have indicated when requesting an account that you had a role in rare advocacy that is not currently allowed to join the community. For example “member of the press”. If this was done in error and you’d like us to update your role please contact us.
This can also happen if you attempt to log in without first being “in the system” with Global Genes. For example those who have registered for any of our events would be in the system (in our database).
If neither of these are the case for you, a work around is to clear your cache, and log in again.