The very first support service that the IPPF introduced, about a year after the Foundation began, was our Email Discussion Group. It was the best and most direct way for us to bring together patients from all over the world to share experiences, information, advice and more.

Through the years, the email group has been an amazing source of support for everyone who joins and gets involved. We have learned a lot about each other, and many of us have become friends, met in person and shared our lives. The IPPF online community welcomes you and invites you to join us.

Our Purpose:
The goal of our group is to learn about pemphigus and pemphigoid, share experiences and provide each other with support. No one knows these diseases the way we do, so we can provide help and advice gained through hard-earned experience. We sincerely believe that our discussion group offers the best place, with the highest concentration of experience and knowledge, to get and share information about pemphigus and pemphigoid.

What We Talk About:
Our discussion topics include symptoms, diagnosis and treatments, doctor/patient relationships, nutritional suggestions and emotional issues. As the official discussion group of the IPPF, we also present Foundation announcements, news from the world's top physicians about current happenings in the research, study and treatment of pemphigus, as well as other information important to those living with pemphigus and pemphigoid.

List Guidelines:
As do most email discussion groups, our list has several important posting guidelines that we'd like everyone to follow. These guidelines cover appropriate and inappropriate subjects for discussion, copyright guidelines for posting from other sources, how possible disagreements should be handled, privacy issues, etc. They also offer suggestions about discussion group and posting etiquette (such as using brief, descriptive and meaningful subject lines). That page also covers our legal disclaimers and notices, which we ask everyone to read.

Joining the List:
We make it easy. Follow the foolproof list subscription "How-To" guide to learn how to join the list, post to the list, un-subscribe from the list, or even temporarily sign-off for a vacation or break.

List Archive:
The IPPF also maintains an archive of past messages (you must already be subscribed and will need a username and password) posted to the discussion group since September 11, 2003. These messages can be sorted by date, subject or author. We also provide a standard keyword search function. Archive access is user name and password protected, so please check out the Archive Guidelines for that information and more.

Questions/Suggestions:
If you have any questions or suggestions on how we can improve our Email Discussion Group, or you just want to drop us a note, we'd love to hear from you. Please contact our List Manager at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it We appreciate your input.