Never miss an article published about your rare disease

by Robert Pleticha

As a rare disease patient advocate, it is important to stay up to date on recent scientific publications in your disease area. Whether your disease has new publications every month, or only once a year, you need to stay on top of that information so that you know how to answer questions from people living with the disease and their families.

Here is a way to receive an email notification when new publications become available online for your disease. Let’s use the example of Behcet’s disease to illustrate how to set up alerts for your disease.

1. Go to

2. Click on the “Alerts” tab




3. Click “Create Alert”

4. Type in the name or names of your disease, include an OR in between search terms. Don’t forget to list alternative names or even abbreviations.

For my example, I chose “Behcet’s disease OR Behcet’s syndrome OR Behçet’s disease OR Behçet’s syndrome



4. Click “Create Alert” again


5. You will now receive an email when new publications are made about the disease. You can create multiple alerts depending on your interests.

Here’s what it looks like in your inbox:

Google scholar email alert

Have a question about setting up an alert? Ask it here….

Use another tool to manage information on your disease? Tell us about it….


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