These days we know that Wikipedia is a go-to source for info on rare diseases. It’s even more powerful when it is kept up-to-date for our patient communities that search the internet! By updating Wikipedia with the latest research and knowledge, we can help patients and families get the accurate info they need and direct people to our individual organizations for more detailed information. We have contracted with Wiki Education to develop a course just for the Rare As One Network!


For your convenience, we are offering two date options. You can choose either date (both if there is no preference). Grantee organizations are allowed to select 2 people to participate. In order to maximize the opportunity and develop skills that will benefit the organizations long-term, we ask that you select*:
Participant 1: A core member of the organization that will remain with the foundation long term (e.g. Founder, President, Executive Director) and
Participant 2: A person highly involved in a research/science role (e.g. Research Director, Research Coordinator). If you do not have an internal science role filled, you may select a core partner from your research network that has the capacity to attend all sessions


*It is expected that both attend all or nearly all of the sessions (8) in their selected course.


Spring 2024

May 24–July 19, 2024
Meeting Fridays from 11:00am – 12:00pm Eastern (8:00 – 9:00am Pacific)
Learn More and Apply



Fall 2024

August 9–September 27, 2024
Meeting Fridays from 11:00am– 12:00pm Eastern (8:00 – 9:00am Pacific)
Learn More and Apply


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Meet Fridays: 8 live sessions with our Wikipedia experts and a focused group of 10-20 other passionate participants


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3 hours per week of light reading, researching your chosen individual and writing directly on Wikipedia


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Access a collaborative community of Wikipedia experts and professional peers


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Amplify your knowledge/expertise from your laptop, reaching an audience of millions

Weeks 1-2: Introductions

Participants will get to know each other and learn about the importance of covering rare diseases on Wikipedia.

Weeks 3-7: Drafting

We will focus on looking and digging into sources and help ensure that participants can access the literature. Participants will analyze the coverage of rare diseases on Wikipedia to help integrate their new articles with what exists across various language Wikipedias. We will discuss general outlines for what these articles should look like.

Week 8: Completing and polishing

In the final week, we will work on ensuring that all drafts are completed and moved to the main space. We will create categories and navigation templates that will improve discoverability of the new articles. Participants with limited experience in the Did You Know process will be given help nominating their articles if they so desire.

Email with questions.