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St. Louis Rare Disease Day 2019 edit party
When and Where
DateThursday, February 28, 2019
Time5:30 pm – 8:00 pm CT
AddressWashington University Libraries, Becker Medical Library, 660 S. Euclid Ave., Room 400
City, StateSt. Louis, MO 63110

Thank you to everyone who attended our edit party! We hope to see you again at another St. Louis area event.

In honor of Rare Disease Day, let's get together to add information to articles about rare diseases about how people can find community support.

Anyone is welcome to attend. If you are a newcomer, we'll help you make your first edit on Wikipedia by the end of the event!

Reserve your spot on the Eventbrite page.

About rare diseases

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If a disease affects fewer than 200,000 people in the United States, it is considered a rare disease.[1] Although the 6-7,000 rare diseases have many different causes, those who have them share difficult paths to diagnosis, a lack of information about their disease once it is diagnosed, and limited access to knowledgable medical support.[2]

This event is designed both to help those affected by rare diseases get the information they need, and to follow and teach the principles of editing Wikipedia.

Event information

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We'll gather for an hour or two and aim to keep the introductory information short. See the info box above for logistics information. Attendance is free.

Please bring your own laptop or tablet to edit Wikipedia. If you cannot bring one, let us know, and we'll find one for you.

Getting to campus

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The Becker Medical Library website has a map and directions to the general library location.

Public transportation

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Take either MetroLink line to the Central West End station, which is less than a block from the library.

Parking

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There is limited street parking on campus, and several parking garages. One option is the Metrolink garage, which is $2.00 for an hour, $3.00 for 2 hours, and $5.00 for 3 hours (plus other ranges but we expect we'll be done by then). The Clayton Garage and Barnes-Jewish Hospital Parking Garage are described on the Becker Medical Libary's map and directions.

Finding the room

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Room 400 can be reached by either elevators or stairs, once you are within the library. If you're not sure where to go, the front desk staff can help.

Note that the exterior doors of the library (and other campus buildings) will lock at 6:00pm. Though we will be able to let you in after they lock, we appreciate everyone aiming to arrive by 5:45pm so we all stay warm and avoid confusion. Thanks!

What to expect

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No Wikipedia editing experience necessary; as needed throughout the event, we'll provide hands-on help for newcomers to Wikipedia. If you'd like, you can get a head start with this this training module.

Resources for editing

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Medical Wikipedia resources

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Attendees

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If you have a Wikipedia account, list your Wikipedia username below to let us know you're coming. (If you type three tildes [~] in a row and save the article, it will automatically place your username and links to your userpage and talk page.)

If you don't have a Wikipedia account yet, don't worry! We can help you set one up at the event. Or, feel free to do so before you come (all the better to have time to decide your username).

In person

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  1. Verbistheword (talk)
  2. LastChapter
  3. Jackiekoerner (talk)

Remote

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We also welcome remote or asynchronous participation, if you can't make the in-person event. Everything you need to help out should be on this page.

  1. ...

What to edit

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Most Wikipedia articles about diseases use a standard set of sections. At this edit party, we invite you to add community support information to articles about specific rare diseases. We've outlined a process below that will be especially helpful if you aren't yet comfortable editing. If you are comfortable, by all means follow your own process or whimsy.

Check out successful edits from last edit party

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In 2016, we had a similar edit party to this one. Here are some articles that were successfully edited at that event:

Below is a step-by-step process for making edits like these to the rare disease article of your choosing.

Find relevant information about support for a rare disease

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  1. Pick a rare disease article that you'd like to improve. If you can't decide, we can help ya.
  2. Take a look through the article. Notice whether it includes information about organizations that support people affected by the disease.
  3. Look up the disease in NORD's database.
  4. Scroll down to the "Organizations" section of the database entry. If there are some organizations listed there, you're in luck! There might be an edit to make to the Wikipedia article.

Add the information to the article

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If you found some organizations that support the rare disease you've selected, you can now draft and add that information to its Wikipedia article.

  1. Decide on the best place to add the information:
    1. If the article already talks about support for the disease, you'll want to add the information you researched there.
    2. If the article doesn't talk about support for the disease, but it does have a "Treatment" or "Management" section, you might want to add it there.
    3. If it doesn't have either existing mentions or either of those sections, you might find another place, or even add your own section.
  2. Whatever the location, you can use our template to simply list the organizations in a sentence. It's really just a fill-in-the-blank.
  3. Add citations. Start by citing the NORD database page. If you can find some other reliable sources, use them, too.
  4. Add a mention of your edits in the "Articles Created or Improved" section on this event page, if you'd like. We like to track what happens at our events so we can improve future events.

If you get stuck, ask for help. And, if it's too hard to find information for the article you choose, it's fine to switch to a different article.

We hope you'll add this information to at least one article. If you have time and energy for more, that's great, too.

Template for "Treatment" or "Management" section

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Follow the steps above to complete and add this template to the "Treatment" or "Management". Don't forget citations!

People affected by [disease] are supported by multiple organizations, including [name], [name], and [name].

Bonus

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You can wikilink the word awareness, if it comes up in your edit, to the consciousness raising article.

Articles created/improved

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Articles that participants have created or worked to improve.

  1. Serkal syndrome
  2. History of intersex surgery
  3. Turner syndrome

References

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  1. ^ "FAQs About Rare Diseases". Genetic and Rare Diseases Information Center. NIH. Retrieved 21 February 2019.
  2. ^ "About Rare Diseases". Orphanet. Retrieved 21 February 2019.
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