Keeping up with current research on a rare disease that affects you or a loved one is a lot to do on top on managing patient care and coordinating with doctors and specialists. We can help by monitoring the scientific literature for recent advances in our understanding or treatment of various rare diseases and collecting them in one place for you.

Our resources include a list of currently published articles along with a brief summary of the contents and findings. You can also sign up to receive updates when new papers are added to the site. We currently offer research updates for the following rare diseases:

Interested in seeing your rare disease featured?

Visit our Facebook page or send us an email, we’d be happy to talk with you.

Want to know when this page is updated?

Sign up to receive automatic updates for rare diseases in which you are interested.