Here are some topics that have been discussed in previous weekly emails entitled “Tips for PFOND”. If you are a new volunteer, you can take a look at these. They can help you work more efficiently.
“What is a good way to share documents online?”
Some of you raise the question how to share papers and other resources with your PFOND partners. Dropbox may provides a solution. https://www.dropbox.com/
It is a free software. When you install it to your computers, you can just save your documents in dropbox and share the file with your partner(s). You can think it as an on-line shared storage space.
If you plan to write together or want to organize writing before posting it, you can use Google doc. (Login to your gmail and click Document, create a new document and share it with others.)
Here is another good way to communicate with your PFOND partner(s).
Our Kabuki site editors have tried cx.com and found it even better than Dropbox. You can read the related post from last week (4/1-4/6) on Piazza: Sharing documents / Info with partner / other editor(s)
“Commonly used medical terms”
Let’s work together on the terminology list for PFOND.
Our Aarskog–Scott site editors have started a “Commonly Used Medical Terms” document, and I invite you to contribute to this list. See the related post from week 3/25-3/31 on Piazza: Commonly used medical terms.
Please leave your terms and definitions as comments on the glossary page http://pfond.cmmt.ubc.ca/wiki/glossary-of-terms/. Later we will add a link to it from the front page and create a long term solution.
Refwork can make your life easier.
To keep our sites consistent, please use the Journal of Medical Internet Research reference style: “Include a reference list (numbered 1., 2., 3. etc.) at the end of the paper. While in-text references are in square brackets , the bibliography at the end of the text must be numbered 1., 2., 3. etc (no square brackets).”
To make it even easier, you can use the free software Refwork to help you keep track of the references! http://guides.library.ubc.ca/refworks
The UBC website provides videos to teach you how to use Refwork, and it is definitely worth the time to learn it.
If you are not a current student of UBC, you may want to check with your library to see whether it offers something similar. Alternativley, you can always do it manually.
“The power of the Web”
This is NOT only for the editors working on Budd-Chiari syndrome but for all our editors.
I found this site when I tried to find out whether there were existing sites for Budd-Chiari syndrome, the above site has good content. A PFOND site for Budd-Chiari syndrome, however, was set up, because our editors can do a even better job to produce more complete and reader friendly content.
Are you ready to take the challenge?
What the audience wants?
At this stage, we don’t get direct feedback from patients and their families. We may sometimes forget who our audience is and what our audience expects.http://dravet.org/ is a patient advocacy group and can provide us a better idea on what really matters to families living with rare diseases.
I hope you will find it useful to help you organize your material.