Thank you for being a member of the Community Congress and welcome to our Member Portal! Below you will find a walkthrough on how to access the site, customize your profile, and engage with the resources. If you have any further questions regarding the portal or the Community Congress, please email communitycongress@everylifefoundation.org.
Glossary
- Working Groups: A space where specific members can interact with each other and receive information from the EveryLife Foundation via file sharing, discussion posts, announcements, and event postings. Groups include all the Community Congress Working Groups, along with more targeted groups for specific issues, events, or members. You will only be able to interact with groups that you have been given access to. If you believe you should have access to a group and do not, please contact EveryLife staff. You may also see Groups referred to by the term Communities – they are synonymous.
Note – Each group is locked based on the permissions of each individual user. This means that if your organization is a member of 4 Working Groups, but you personally are only a member of 2 Working Groups, you will only be able to view the pages for those 2 groups.
- Resource Hub: View all the resources (documents, slides, meeting summaries, etc) you have permission to see in all your groups. These resources can be filtered by document type and sorted by various terms, such as A-Z or newest-oldest.
- Library: Each Group has its own individual Library. It functions the same as the main Resource Hub but contains resources for only that specific Group.
Accessing the Site and Homepage
First-Time Users: New users should go here and enter their email to request a password reset. Please check your spam folder if you do not see the email in your inbox. Click the link in the email and create your own password.
Five Steps to jump-start your Community Congress portal experience:
- Interact in a Discussion: On the homepage, just scroll down the feed to see if there is a topic of interest and click on “Reply”. Make a comment and begin your engagement!
- Register for an Upcoming Event: On the homepage, scroll down and look on the right-hand side of the screen for “Upcoming Events” and click on the meeting of interest to register.
- Add a profile photo: Click the profile icon in the upper right-hand corner and access your profile. On the left, there is a user icon. Click “Actions” and “Change Picture” to upload a profile picture.
- Access the latest Meeting Summary Notes: To get caught up on recent agenda items from your working group, go to the working groups tab at the top of your home screen and click on the drop-down group of your choice. From there navigate to the “Library” tab in that group and browse through until you see the latest summary notes and presentation slides. Alternatively, view all your resources under the “Resource Hub” in the navigation bar.
- Learn More: Read this entire guide to learn all the tips and tricks for maximizing your experience!
Logging-In
- The portal url is: www.rarecongressmembers.org. It can also be accessed from the “Member Portal” tab of the Community Congress website. Once on the site, click “sign-in” in the upper right-hand corner of the page. Enter your email address and the password you created to log-in.
- Note: All users are pre-loaded into the portal through the EveryLife Foundation’s internal database. If you are having trouble accessing the site, it may be due to the email address we have on file. Please contact communitycongress@everylifefoundation.org if this issue occurs.
Home Page
- Once logged in, you will see the home page. This page is customized to display information from all the groups you participate in. In the center of the screen, you will find three widgets showing the most important information we are promoting. If you scroll down the page, you will see the heading Quick Links, which contains links to different pages on the portal:
- My Profile: Enter all information you want to share like name, photo and organization.
- My Privacy Settings: Adjust what is viewed by others in the membership portal.
- Email Notification Settings: Set preferences to how often (or how little) you receive email notifications of a thread post.
- Create a Discussion: Post a Q&A or an open-ended discussion topic.
- FAQ/Help: Search for common topics and get answers on troubleshooting.
- Portal Guide: Full Member Portal Guide.
- There are also several other widgets on the home page:
- My Profile: Displays your headshot, title and organization, as well as engagement metrics.
- My Communities Quick List: Displays the working groups you belong to as well as the total number of participants.
- Upcoming Events: Lists all upcoming Community Congress Meetings and Registrations Links.
- Engagement Leaderboard: Displays the top member engagement. Try to outpost your peers!
- Followed Content: Customizes the topics that are most relevant to you and your feed.
Navigating the Site
- At the top of every page on the portal, you will see the Community Congress logo on the left and a series of tabs across the top. Clicking the logo will bring you back to the home page. Clicking the tabs will do the following:
- Home: Redirect back to the home page
- Working Groups: Reveals a drop-down menu with quick links for the 4 permanent Working Group pages, along with the All-Members group. Please note that if you are not a member of a Working Group, you will not be able to view any content after clicking the link.
- Resources: View all the resources in the Resources Hub (documents, slides, meeting summaries, etc) you have permission to see in all your groups. Get Started offers a quick guide when you are logging in as a new member.
- Events: View and register for all events you have permission to attend in all your groups
- Directory: Search for other members in the member directory
- Browse: Reveals a drop-down menu of the following miscellaneous links
- Announcements: View all announcements, from all your groups
- Discussion Posts: Start a new discussion in the group of your choosing
- In the top left corner of every page, there are two buttons
- Terms and Conditions: View and read the terms and conditions from our vendor
- Contact Us: Send a message to the EveryLife team (but you are always welcome to just email us directly!)
Search Function
- In the upper right corner of the page, there is a search bar. Input any term(s) to search the portal. The search function will pull results that match your search from all Groups you are a member of, as well as any discussions, resources, events, or announcements you have permission to view. The search function will search through resource titles and content.
- Searches will automatically sort by relevance but can also be sorted by date.
- Searches can be filtered by many categories, including but not limited to type of resources, group, author, comments, and creation date.
- Once on the search page, you can utilize the “Formal Tags” on the left-side of the screen. Tags are created by the EveryLife team to help categorize and filter information for members. Tag examples include “Meeting Summaries” and “New Member”. Combining tags with other filters help narrow potential search results.
Access Your User Profile
There are three ways you can navigate to your profile to start updating information about yourself.
- Click on My Profile in your Quick Links
- Click on the top right corner and click on profile in the drop-down menu
- Click on the box on the left-hand side of your screen
My Profile
- All users are pre-loaded into the portal through the EveryLife Foundation’s internal database. Your name, organization, and email address will already be listed on your profile
- If you would like to change any of this information, please email communitycongress@everylifefoundation.org. We would like to update that information in our internal database so we can address your name, company, or email correctly across our programs!
- On the left, there is a user icon. Click “Actions” and “Change Picture” to upload a profile picture
- Underneath the profile picture, you will see the header Contact Details. Click the pencil icon to edit your details
- Email Address, Company Name: See note above about editing these details
- All other contact details can be edited at the discretion of the user
- Social Links: Can link to any social media/blog account of the user’s choosing
- Bio: Create a personal bio about your work and life interests
- Education: Share your educational history
- Job History: Share your job history
- Professional Associations: Share any professional associations you have been a member of
- Honors and Awards: Share any of your life achievements
My Connections
- Communities (working groups): Displays the communities you are a member of
- Following: Displays any discussions you are following
My Contributions
- My Summary: Displays a chart categorizing your activity on the portal – interacting with discussions or resources. Click on a segment to view the exact resource/discussion
- My List of Contributions: Displays the exact content you have contributed to the portal
My Account (Privacy and Notification Settings)
- Privacy Settings: Users have complete control over what personal information is displayed on the platform. To be clear, all pages on this portal can only be accessed by members of Community Congress. None of the information you put on this site can be viewed by the public. Although we encourage members to keep their profiles visible on the portal, if you do not want your profile to be visible to other Community Congress members on this site, select “No” to the line “I would like to be included in the member directory and community rosters.”
- All other contact details can be individually made visible or hidden from other members. Members Only means that information will be visible to all members on the site. Since the portal is only for Community Congress members, Public also means that means that information will be visible to all members on the site. Only Me will hide that information from all other users.
- Email Preferences: Opt-out of different categories of email notifications
- Email Notification Settings or Community Notifications: Determine the level of email notification you receive from each of your groups.
- Real Time: Receive an email every time a resource is added, or discussion comment made
- Daily Digest: Receive one email at the end of every workday containing a summary of all comments and resources added that day for that one group. This sends a separate email for each group that has Daily Digest turned on.
- No Email: Turns off email notifications
- Consolidated Digest: Instead of receiving separate daily digests for each group, consolidates all digests into one email
- Note: If you are many groups, it is recommended to place them all under the consolidated digest. If you are in a few, it is recommended to receive the separate digest for each group.
- Discussion Signature: Set a signature to display when you comment on a discussion. It is set to display your name, job title, and organization, but this is entirely customizable.
Interacting with Groups
- Each group has its own homepage. It functions like the site homepage, except it only displays information relevant to the group. This is the space to interact with discussions and resources based around a topic.
- Community Home: Features the latest resources, announcements, and discussions for a group.
- Threads: View discussions and Q&A of that group.
- We encourage you to utilize these message boards to interact with your group members! Please be aware that all boards are self-moderated. If you believe a post violates community standards, you can flag it for review by an EveryLife staff member.
- We ask that posts be kept to policies and issues related to Community Congress initiatives or rare disease-wide matters. These forums are not intended to be advertisements for disease or organization-specific materials. Forums are intended to generate meaningful dialogue amongst members.
- How to add a new discussion:
- Post to a Community: You must select a group to post your thread to. Only members of that group will be able to view and respond to your post.
- Focus Your Thread: Select whether you want this post to generate a conversation (Open-ended discussion) or if you have a specific question, you would like answered (Question to be answered).
- Cross Post to: This is an optional field that allows your post to be linked to another group you are a member of. The post responses do not combine, the threads are kept separate. Please only use this field if a topic truly pertains to multiple groups.
- Discussion Subject: Please type a relevant subject for your post.
- Then type away in the text box! You can also add attachments and save the post as a draft.
- To reply to a post, just click the post and then hit “reply”. This will make a public reply. We recommend that you make all substantive replies to the public.
- Click the arrow next to “Reply” to reveal more options.
- Reply privately: Reply to the original poster individually. We recommend that you make simple comments, such as “Me too!” or “I agree!” privately to not overwhelm the discussion.
- Mark as Inappropriate: Flag a post for review by EveryLife staff.
- If you want to “like” a post, click the “Recommend” button.
- Above the “Recommend” button is toggle button “Follow”. Toggle that button on to receive notifications about a conversation.
- Library: View all resources related to that group.
- Resources are organized into different folders (for example, meeting summaries for a Working Group will be stored in a folder title [Working Group Name] Meeting Summaries).
- Click on a folder to view the documents housed within.
- Just as with discussions, you can also “like” folders by hitting the “Recommend” button.
- Select a document to view in your browser, or hit “Download” to download the document.
- Note: Members do not have permission to add resources to libraries. Clicking “Create Entry” will result in an error.
- Events: View and register for events for that group.
- Members: Search the member list of that group.
Feedback
- We are always soliciting feedback! This portal is a new step for the Community Congress that we hope will improve member experience and engagement. That means we want to hear from YOU. If there are features that are not user-friendly, changes you want to see made, or ideas you have for enhancing the site, please let us know! We will take all suggestions into consideration. Any comments should be emailed to communitycongress@everylifefoundation.org.
- You can also use the “Contact Us” tab in the upper left corner of the site. This will send a message to the same email address.