Frequently asked questions

What is RareShare?

RareShare is an online social hub for those affected by rare medical disorders. Whether you are a patient, family member, friend of the family, or healthcare professional, you are invited to join RareShare. Our goal is to become the #1 aggregator of information about rare disorders on the Web. We’re still young, but we hope you decide to join us as we grow.

Why should I use RareShare?

You should use RareShare because you are interested in connecting with others that are affected by the same medical disorders. That’s the goal of the Site and we hope you find it useful.

How much does it cost to join?

Joining RareShare is absolutely free and takes less than a minute. Click here to sign up today.

If RareShare is free to join, how do you make money to support the Site?

RareShare is a part of the Rare Genomics Institute, an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe.

Why are changes moderated?

By moderating changes, we believe that we can create a safer environment for our members to share information and experiences about rare medical disorders. In other words, we are trying to prevent spammers from infiltrating the site.

What happens if I cannot find my community?

We are constantly working on adding new communities to RareShare. If your community is not listed, please send an email to communities@rareshare.org. We will do our best to get it up right away.

How do I contact RareShare?

We always enjoy hearing from our members and those interested in providing feedback about the Site. Please send all inquiries to support@rareshare.org. While we may not be able to respond to all emails right away, we promise that your email will be read by a member of the RareShare staff. Please do not send any medical related questions, as our policy does not allow us to respond to those.