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Email Discussion Group

The goal of this discussion group is to provide information and support to those living with, and suffering from pemphigus/pemphigoid, and/or their families, friends, etc. These guidelines protect the individual members of our group, as well as the Foundation. Membership in this discussion group is a personal choice. Anyone may sign themselves off the group if they do not agree with these guidelines and are not willing to follow them.

View the Guidelines

  • The acceptable topics for this e-mail discussion group are limited to pemphigus/pemphigoid and its associated treatments, side effects from treatments, support, encouragement, and non-medical advice. Because of the wide cultural, religious and ethnic diversity of the members of the group, topics such as religion and politics WILL NOT be discussed. For similar reasons, jokes about sex, religion, politics, ethnicity, etc. are also prohibited.
  • Matters of personal disagreement are to be handled individually and privately in a respectful manner, OUTSIDE the public discussion group. Insulting, harassing or defaming anyone is not allowed. On occasions where potential offense may be taken, responsibility lies with both parties to keep the discussion group on topic.
  • All information posted in the discussion group should remain within the discussion group and be treated as confidential. It should not be posted in any other forum, i.e. cross-posting to other lists is not allowed.
  • Copying a short excerpt from a web site is acceptable provided the source is correctly identified and a link to the source site provided. Copying long passages or a large amounts of material from another web site is not allowed without the permission of the original author. Anyone who violates this rule will be sent a private e-mail advising him/her what is acceptable. If there is any doubt, then it’s probably too long and the best thing to do is to direct people to the original site. Also note that attachments are not allowed due to potential problems with computer viruses.
  • The discussion group is not a forum for grievances about how the International Pemphigus & Pemphigoid Foundation is run. All comments about the administration of the Foundation should be sent to the Chief Executive Officer who will forward them to the Board for review if necessary.
  • If anyone forwards to the group, without permission, all or part of a personal e-mail to the group that was meant for their eyes only, that person will be warned privately that this is unacceptable. If that person does it again, he/she will be removed from the group (unsubscribed). Forwarding personal e-mail is an unacceptable breach of confidentiality.
  • These are simple rules by which everyone should be able to abide. They are provided in order to protect all individuals seeking information and support. If these rules are broken, the Group Administrator will send an e-mail PRIVATELY with a reminder of the rules of the group and that breaking these rules could mean removal from the group. If the problem continues, a second (and final) warning will be issued – but there will not be a third one. If any rules are broken again, the person will be removed (unsubscribed) from the group.
  • If you have any questions about these guidelines, or for more information, please contact the IPPF.

How to Subscribe

Send a blank message to: discussion-on@pemphigus.org
(NOTE: this goes to a computer, nobody in the group will see it.)

How to Unsubscribe

Send a blank message to: discussion-off@pemphigus.org

Sending Emails to the Group

After you have subscribed, to post messages to the group, send a message to: discussion@pemphigus.org
(Introduce yourself!)

If you are having trouble, have a suggestion on how we can improve our service to you or just want to drop us a note, please send a message to info@pemphigus.org. We appreciate you taking the time.

Responding to Group Emails

When responding to messages posted to the group, please be aware that the “reply” button in your e-mail program will return a message only to the individual who posted the message. “Reply all” will send a response to the sender AND the group, which results in 2 duplicate messages for the individual who posted the original message. Most often, the most appropriate reply will be only to the group address (discussion@pemphigus.org).

Occasionally, private messages are appropriate, but please keep in mind that the object of the group is to help and learn from each other, and responses to queries presented to the group are often beneficial to the entire group.

Temporary Vacation Mode

If you are going to be temporarily away from your email and you do not wish to receive the group’s email during that time, send a blank email to: discussion-vacation@pemphigus.org

This will temporarily suspend you from receiving the emails without having to go thru the complete sign-off/sign-on process. When you return and would like to resume your participation in the group, send another blank email to the same address.

If you have any questions about joining the group, or for more information, please contact the List Manager at listmanager@pemphigus.org.

View the Email Discussion Group Archives!

All messages posted to the discussion group (beginning September 11, 2003) are saved in the discussion group archive. This treasure-trove of patient provided information is a great place to find answers to questions. In the interest of making the archive a useful and valuable resource, please keep the following in mind as you contribute to the discussion group: You can only read on the archive site.
To enter the site, the user name is “discussion” and the password is “monday"

View the EMD Archive

  • P/P Awareness Campaign
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  • @healourskin April 17, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @diabetesfuna @GlobalGenes @Immunotx_papers #raredisease #nord

  • @healourskin April 11, 2018

    Save the date! 2018 Annual Patient Conference Raleigh-Durham, NC October 12-14 Hosted by Donna Culton, MD (UNC Depa… twitter.com/i/web/status/9…

  • @healourskin April 10, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @HSP_90 @RareDiseases @ThriveChiroFL #nord #progress

  • @healourskin April 3, 2018

    The latest Pemphigus & Pemphigoid Weekly! paper.li/healourskin/13… Thanks to @RareDiseases @TregCellRadar @ImmunePharma #raredisease #nord

  • @healourskin March 29, 2018

    Checkout the latest from PemPress: Strategies for Managing Pemphigus and Pemphigoid ift.tt/2GgsIux… twitter.com/i/web/status/9…

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About IPPF

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.
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Contact Us

International Pemphigus & Pemphigoid Foundation
1331 Garden Highway, Ste 100
Sacramento, CA 95833
United States of America

info@pemphigus.org
(855) 473-6744
(916) 922-1298

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