RareConnect Privacy Checklist

We want to keep you and your health information safe and private online. RareConnect does not sell data to third parties or in any way share the information you add to your community. Please take a moment to review RareConnect’s privacy policy.

To stay safe on RareConnect, we’d like you to ask yourself a few questions.

1. All RareConnect profiles are set to be visible to Members only.

This is the default option now. If you want to have a public profile so your stories and posts are indexable on Google follow these steps.


1. Go to Menu > Edit Profile link


2. Select your Profile visibility

About Privacy Statuses: You can define your desired level of privacy for your profile:

Profile is visible to users on RareConnect
Only members registered on the platform will be able to access your profile page

Profile is visible to everyone (even Google) 
Anybody can access your profile, even search engines


Have you used your full name, or included too much-identifying information in your profile or post?

Some people do not mind sharing their first name and last name alongside their story. For others, including disease information in an online community with their name could leave them open to an invasion of privacy by insurance companies or employers. Before you click on publish, should you be including your: last name, email address, physical address, the name of city if you live in a small area, or information about family members? RareConnect is a place where you can keep your relationship to a disease, and your personal identity separate if you chose to. 

Do you make your forum posts private or public?

Click on the globe icon to see the privacy options. The default option is only visible to “Other RareConnect users”. Maybe some information like welcome messages from the moderators, awareness campaigns, new articles, crowdfunding initiatives… should be posted publicly so they’re indexable on Google and can reach a wider audience.

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Did you check the profile of a person sending you a private message?

If another member of your RareConnect community wants to get in touch with you outside of the public forum, pause and ask yourself what you know about this person. Did they fill out their RareConnect profile? RareConnect is for patients, caregivers, patient groups, and invited medical professionals. If a member does not fit one of those categories, we would like to know. If you have a concern about a member of the community, contact the RareConnect team: info@rareconnect.org

Who else is a member of your community?

Click on the Members tab of your community. Take a moment to view the profiles of some others there. If members have a similar or interesting description, send them a friend request to connect. If you have a concern about a member in your community, inform your moderators and the RareConnect team at: info@rareconnect.org



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