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Have YOU Been Online Lately?

The IPPF website redesign continues to bring in compliments and comments from around the world. The IPPF Community site is where people interact with other patients and caregivers on all issues related to pemphigus and pemphigoid. You can register for FREE at

Online There are over 1,200 postings in the Forums on topics such as medications, treatments, nutrition, and lifestyle issues from over 2,250 registered users. In June/July 2008 there were over 30,000 pageviews! A page view is counted each time one page is viewed and is considered more accurate thanhitsfrom search engines. This shows the actual number of pages visited by a person.

These statistics are pretty amazing when you consider the number of people affected by pemphigus and pemphigoid is relatively small. For example, according to Google Analytics, people visited other skin condition websites for an average of 24,376 page views, 3.31 pages viewed per visit, and remained for just over 2 minutes. In contrast, the IPPF Community saw 31,886 page views, 12.31 pages viewed per session, and visited for an average of 7.5 minutes.

About 10 people join the online community each week. This means that not only are people getting the information they need when then need it, but they are looking for interaction with other patients and caregivers.

The most popular feature of the Community resource is the forums. We have also added searchable directories of peer support volunteers and referral doctors, and a BETA chat function is in testing.

Before you drop this issue of the Quarterly and head over to the Community website for a quick chat, the chat does not work with Internet Explorer at this time (more information on the Community website). The IPPF, along with the developers, are working to correct this. However, the chat has been tested with Firefox, Opera, and Safari and works just fine. On our site, there are links to these browsers.

See the IPPF Community FAQ article on page 12 for more information!

文章分类 Issue 54 - Fall 2008


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.