For Rare Disease Advocates Editing Wikipedia Entries
Wikipedia entries are often at the top of results for rare disease and condition searches.
Rare disease advocates can make good editors for conditions that they have strong familiarity with. Wikipedia has some guidelines worth reviewing before you begin. Writing for wikipedia is a bit different than writing for a non-profit organization's educational materials.
You should not think of wikipedia as a platform to promote non-profit or support organizations, but rather a platform to increase understanding of the rare disorder/s that you are working with.
Wikipedia Manual of Style for Medicine Related Articles
Identifying Reliable Sources (Medicine)
PubMed citation generator
Just enter the pubmed ID in the first box and check off "Add ref tags around citation templates". Then you can copy the text in the result box and paste it inline where you want the reference. http://toolserver.org/~holek/cite-gen/index.php
More about citing sources http://en.wikipedia.org/wiki/Wikipedia:Citing_sources
This is the box at the top right of most disease pages http://en.wikipedia.org/wiki/Template:Infobox_Disease